The Lord’s idea of adventure and my idea of adventure are radically different. My adventure began with a dream of flying to China, bringing home a child, doting him with love, he’d love me in return and we’d skip down the Great Wall in fairytale fashion into our happy adoptive family life that would fit together like a perfect puzzle piece! Somewhere between him being afraid of a tall blonde and hearing “did you know” followed by something else that we “didn’t know” at every doctor’s appointment, my perfectly fitting puzzle piece started looking more like a square peg getting jammed into a circular hole.

Let me walk you back to the beginning of our story. Judah was a Special Focus child. “Special Focus” usually means “multiple special needs” or “you’d better be ready for this”… same thing. For us, these “needs” seemed minor! We were being led by the Lord, people! Nothing was too difficult for this faithful family. The file said Judah was born Imperforated Anus, minor deafness in one ear, and needed one of his testicles to descend. No biggie, right?

I remember sitting on the phone with our pediatrician and hearing her say “Oh, Imperforate Anus… well, that has to be corrected or he’d die, so that’s not a problem.” That conversation was ringing in my ear that first night with our little guy. “Not a problem”. I was handed a hurting, sick little boy. But how could that be if everything was “not a problem.” The first time I changed his diaper I gasped. My adventure quickly took a tail spin into an unknown place. I wasn’t prepared for this. We weren’t prepared for this.

One night Judah was crying and my husband picked him up, hugged him so tight and said, “You were meant to be my son and everything’s going to be okay.” Two years later, it is okay.

VACTERL stands for:
Vertebral defects
Anal atresia or imperforate anus
Cardiac defects
Tracheo-esophageal fistula
Renal kidney anomalies
Limb abnormalities

People diagnosed with VACTERL association typically have at least three of these characteristic features. One in 10,000 to 40,000 newborn are considered VACTERL. Judah is the V, A, C, and R part of that acronym.

Every doctor’s appointment we went to led to more uncertainty on my part as a parent and how to best help my child. We were scared and confused. But guess what? Six months after Judah’s arrival in the US, one of the top doctors in the world moved 30 miles away from us and into a massive practice helping other children just like Judah. People bring children from all over the world to visit Columbus, Ohio because of the expertise of the amazing team of specialists sitting at OUR local Children’s Hospital. Praise Jesus.

Along the way we’ve learned a few things about this type of special needs adoption. Normal for me and normal for Judah are going to be different. But normal (for him), nonetheless. To protect his privacy I’ll leave out the lovely bathroom details and daily routines, but I want you to know how manageable they are. For now, Judah just assumes everyone has an enema. If I’m in the restroom and he knocks on the door he asks me 1 of 2 questions: 1. Momma, are you having your enema? or 2. Do you want to build a snowman? It is what it is… and that’s okay.

– guest post by Jeri

The post Judah’s Perfect Puzzle appeared first on No Hands But Ours.

Instead of beginning this article with a list of questions and daunting answers, the first thing I want to include is our most frequent ANSWER…

These little girls are beyond precious! Our cloaca child is the light of our lives! They need you to come for them and you will reap a million times more than you invest.

Do not be afraid. Be informed. Be prepared. That is what you are doing by reading these FAQs.

A: A persistent cloaca is a complex anorectal congenital birth defect in which the rectum, vagina, and urinary tract meet and fuse into a single common channel.

A: Diagnosis of a child with cloaca should be suspected in a female born with an imperforate anus and small looking genitalia. In our daughter’s case the file read “ambiguous genitalia”. Her file indicated that she was female and included a picture of what seemed to be normal exterior genitalia. We now know that this description can mean many things.

A: Most likely your child will have had a colostomy immediately and then possibly a reconstruction of the anus and a colostomy reversal at about one year of age. She may also have had daily dilations to prevent her anus from shrinking.

A: In addition to the regular exam for all adopted children, because children with cloaca have a high incidence of associated anomalies and the defect may occur as part of a syndrome such as VACTERL (vertebral, anorectal, cardiac, trachea-esophageal, renal and limb) she will need an experienced team of specialists to assess her situation. This team should be a part of a complete colorectal program that includes gastroenterology, gynecology, urology, nephrology, neurology and surgery in each specialty.

(note: our biggest mistake was thinking that our daughter’s situation was purely a urological issue and that a local specialist could handle our daughter’s condition. Even if your local urologist has treated such a condition in the past, your daughter needs the experience only a full team can provide.)

We recommend Dr. Marc Levitt at Nationwide Children’s Hospital, Cincinnati Children’s Hospital, and Dr. Shumyle Alam at Columbia University Medical Center.

This team of specialists will likely require:

• a full urological evaluation as soon as possible as 90% of girls with cloaca have urinary issues which will include a renal ultrasound and a pressure flow test (urinary issues may be serious in nature, our daughter was refluxing urine back into her kidneys)
• x-rays and a MRI to determine is she has spina bifida and/or a tethered cord
• an ultrasound of her ovaries and uterus
• a sedated scoping of the channels by a colorectal surgeon, a pediatric gynecologist, and a pediatric urologist to determine function
• an x-ray of her colon to see how her colon is processing stool

A: She will need a surgery called a PSARVUP (posterior anorectal vaginal urethral plasty) or “pull-through” surgery which properly positions the affected structures. If you child has had surgeries in China there is still a good possibility she will need this surgery once home. Hospital stay will be around 10 days and pain levels during recovery are surprisingly low. The hardest part can be the days your child cannot have food or drink. Other surgeries will be indicated if your child has a tethered cord, renal issues, or issues with continence.

A: Cloaca children usually need to enter a bowel management program. Your child will most likely have experienced constipation in her orphanage. She may not have adequate feeling or a properly working sphincter. It is essential that she have a bowel movement every 24 hours as constipation stretches out the colon. This can be as simple as learning to use the proper doses of laxative. Some children will need a daily rectal enema to stay free of stool. Some will need surgery so that the daily colon cleanse is done via a stoma in their belly button which is called a Malone/ MACE and often times with surgery is combined with other necessary surgery or surgeries. New technologies for bowel management include the Peristeen and the Sacral Nerve Stimulator. You may need to participate in a weeklong bowel management trial which will include training, a daily x-ray to see that a complete BM has happened, and tweaking of the formula so it is specific for your child. The goal is a “socially continent” child with a daily clean colon no later than school age.

A: Urinary continence without surgical intervention is rare in cloaca patients, but “social” urinary continence is attainable! Some children need only take medicine to regulate the pressures in their bladder while others can catheterize themselves through the urethra. A few may need a procedure called a Mitrofanoff, which creates a stoma in the abdomen through which patients catheterize themselves for urine. Recovery for this surgery was more difficult than the PSARVUP. Our daughter’s surgery included reimplantation of her ureters, Malone, Mitrofanoff, bladder neck division, and bladder augmentation. Pain management was a bigger issue. Your child will leave the hospital wearing urine bags on her legs for several weeks. You will later return to have the tubes removed and to learn to cath via the newly created stoma.

A: After surgery, your daughter can expect a normal and fulfilling sex life, and many cloaca patients are now adults who conceived children but underwent a C-section for delivery.

A: It is a challenge at first, but you and your child will soon develop a routine that becomes second nature. Our 8 year old has been cathing herself for two years now. She takes attends church and school, swims, rides her bike, climbs trees, and dances. The nightly colon flush takes an hour. There have been a few hiccups along the way. Your local pediatrician, nurse, pediatric general surgeon, and emergency room are not likely to be completely at ease with medical intervention, and you will likely need to call your surgical and follow up teams and talk with them regarding your child’s needs.

What is a normal day like? Laughter, amazement, joy, and admiration are in abundance, and if you read our family story on No Hands But Ours you will learn that we went back to China for a second daughter with a similar diagnosis (pictured above).

– guest post by Stephanie

The post Frequently Asked Questions about Complex/Persistent Cloaca appeared first on No Hands But Ours.

We saw her face. We fell in love. Nothing else mattered.

My husband and I simply wanted to be parents and we knew in our hearts that our children were in China; we just had to go get them. Like most parents to be, we hoped and prayed that our children would be healthy. Our first child’s SN was minor and had resolved by the time we brought him home. Imagine our delight when our agency showed us the file of a beautiful baby girl with a “repaired” imperforate anus. We were ecstatic (and considered ourselves lucky) to be bringing home another healthy child!

We did not have a reason to think anything else. No one we talked to told us any differently, not the multiple pediatricians we talked to and not the international adoption doctor we consulted. We were told she would suffer from chronic constipation and we would need to watch her diet, and possibly give her a laxative.

WOW! Doesn’t that sound easy?

I am thankful everyday that we went through her adoption wearing rose-colored glasses. God was protecting us. With tears in my eyes as I type this, the painful truth is if we had known what we know now, we would have said no. That absolutely breaks my heart. My little girl is exactly where she is supposed to be. She was the missing link in our family and she completes our perfect family of four. I can’t imagine one single minute of one single day without her in my world.

It started in China when we opened up her diaper. We were horrified by what we saw. We did not know what was wrong, but we knew that it definitely did not look right. I found myself overwhelmed and unprepared for her needs. Post-adoption depression is real and not talked about nearly enough.

Trauma is real for these kids and it is so difficult at times. I was not prepared for the need to travel for care. I was not prepared for the enormity of the “re-do” surgery and recovery. I was not prepared that my daughter might be the “smelly girl” at school, a thought that brings me to tears. I was not prepared for a lifetime of daily enemas.

Our journey has been long. Our journey has been hard, but it has also been so worth it!

I was very alone when we went through all the surgeries and recovery for my daughter. I found myself looking to the internet for support and started finding other moms that were traveling the same road. Two years ago, on a whim, I stated a FB group for moms with children born with an ARM and adopted internationally. The group, which started with four women, has grown to over 200 members and is an amazing support system and community.

In an effort to help my daughter, I have read everything I can get my hands on regarding ARMs. I have talked to every professional I can find that will talk about this defect, and it has been my mission to share what I have learned with others. I am happy to chat with potential parents as I feel that knowledge is power.

I have put together a list of the most commonly asked questions (and answers) that I get and shared it below.

– guest post by Heidi

A: When reading a file these terms appear to be interchangeable and essentially mean the same thing. The proper terminology for this defect is Anorectal Malformation (or ARM).

A: An ARM is a spectrum of abnormalities of the rectum and anus. There are many possible abnormalities such as:

• The absence of an anal opening.
• The anal opening in the wrong place.
• A connection, or fistula, joining the intestine and urinary system.
• A connection joining the intestine and vagina.
• In females, the intestine can join with the urinary system and vagina in a single opening, known as a cloaca.

A: There is no known cause for anorectal malformations and most cases are isolated and do not run in families. This birth defect occurs in one in every 5,000 live births. It is more common among Asians and is somewhat more common in boys than in girls.

A: If there is a fistula (opening) to the skin, urethra or vagina, and the newborn is able to pass stool then often a colostomy is not needed. If there is no anal opening and the newborn is unable to pass stool then a colostomy will be required. Once the anal opening is made, the colostomy can be taken down.

However, in China, often the newborn is given a colostomy regardless of the type of defect. This is done as a life saving maneuver. The anoplasty – or creation of the anus – can be done in China, or more ideally by an expert once home.

A: The PSARP (posterior sagittal anorectoplasty or pull-through procedure) was introduced by Dr. Alberto Pena in 1980. This surgical procedure revolutionized the treatment and outcome for these children. Often, children adopted from China do not receive this surgical procedure and an older technique may be used. A video and more information on this procedure can be viewed here.

A: Typically, this can be done in one surgery and is done in the neonatal period and a colostomy is not required.

A: The child will require 3 surgeries. In the first 1-2 days of life, the newborn will need to have a stoma made in order to pass stool (colostomy). After a few months (allowing the child to grow) the surgery can be done to create the anal opening. This operation is followed by a series of anal dilations. Once dilations are complete, the child will have an operation to take down the colostomy and connect the colon to the rectum. The child will then be able to pass stool through the new anus.

A: In order to prevent stricture or narrowing of the anal opening, a series of dilations are required postoperatively. If the anal incision contracts or becomes tight, then it will be very difficult to pass bowel movements. This process typically lasts several months.

Often it is found, in our children adopted from China, that the anal dilations were not done correctly. The child’s anal opening may be too small. In this situation, a “re-do” operation may be required. In some situations, the anal dilations will need to be repeated.

Typically, anal dilations will need to be done again after the “re-do” operation. However there is one surgeon in the US that is doing this procedure and dilations may not be needed.

A: Sadly, this is very common. The surgeons do the life saving maneuver to open the anal opening but often do not place the new anus through the muscle complex. In most cases, unless a “re-do” (PSARP) operation is performed, the child will have difficulty achieving social continence. You need a very highly skilled and trained surgeon to perform this type of surgery.

A: Most families travel to an expert to have this surgery done. The day before the surgery, an NG tube (a tube from the nose to the stomach) is placed and the child is given golytely to clean the colon. The typical protocol is to have the child remain NPO (nothing by mouth, no food or drink) for an average of 7 days post-operatively. The child is given nutrition from an IV. About a month after the surgery, the child will require anal dilations be performed by the parents for about 4-6 months (but there is one surgeon who is doing a new procedure where anal dilations may not be needed).

Some surgeons will place a colostomy for the “re-do” and the child will require another surgery to take down the colostomy once the anus has healed.

A: Children with ARMs can fall on the VACTERL association spectrum. If a child is diagnosed with VACTERL, they typically have 3 or more of the anomalies listed below. It is important to understand that most children are screened for these anomalies in China. Often parents are “surprised” to learn about these anomalies once home.

V – vertebral anomalies – the most common thing we see in our children is a tethered cord
A – anorectal malformation
C – Cardiac or heart defects
TE – tracheoesophageal atresia/fistula
R – renal or kidney (this is very commonly seen in our ARM kids)
L – limb abnormalities

In addition to the above anomalies, girls born with an ARM often have gynecological concerns/anomalies (including cloaca) and hypospadias is often found in boys.

A: As moderator of a large adoption support group, I get this question asked a lot. It is often difficult to answer, as every defect is so different and there are so many factors to consider when determining continence. It is important to know that the large majority of ARM children will always struggle to some degree with their bowel movements and some struggle more than others. Some children experience stool leakage and soiling more than others. Most ARM children will potty train later than other children. However, almost all of these children can remain clean and in normal underwear at typical potty training age along with their peers with bowel management.

When discussing continence or soiling, there are three factors to consider.

1. The quality of the pelvic muscles. Abnormal muscles may result from poor development as commonly seen in ARM children. Abnormal nerves may be a result of congenital neurologic anomalies such as a tethered cord or spine bifida.
2. The ability to sense stool. The ability to sense the presence of stool in the rectum is either present or absent. This will vary from child to child. If absent, conscious control of the pelvic muscles and the anal sphincters may be learned as the child gets older.
3. Chronic constipation. Chronic constipation will decrease the ability to sense the presence of stool. The relief of constipation can improve this rectal sensation.

It is crucial that constipation is prevented in these children in order to remain continent and free from soiling.

The most important thing to know is that with successful bowel management ARM children can be socially continent and wear normal underwear!

A: Children can achieve bowel control with a daily stimulant laxative (senna based product such as ex-lax) or a daily large volume enema. Some children can achieve continence (free from soiling) though diet alone, however, this is the exception and not the norm. The goal of the daily laxative or enema is for the child to completely empty the colon at a predictable time each day. Once the colon is clean then the child should remain clean and in underwear the rest of the day. Often, families will travel to an expert to determine a specialized plan tailored to each child.

There are procedures that can be done which allow children to receive an antegrade enema as opposed to a rectal enema. These children receive an enema via a catheter inserted in a small hole their abdomen (usually in the bellybutton) instead of the rectum. These procedures are commonly known as the Malone or appendicostomy, as well as cecostomy.

A: This answer will vary from family to family as every child born with an ARM is different, but the one thing we all have in common is poop! Yep, our lives revolve around our child’s pooping schedule.

The few that are able to manage with diet watch their child’s diet very closely and make adjustments according to the child’s stool output. Preventing constipation is key in these children, so parents intervene as necessary with things such as enemas, suppositories, and laxatives. Often ARM children need a bowel management program, especially in their early pre-school and school age years.

Those that manage with laxatives also tend to keep an eye on diet. These children typically sit on the potty everyday for 30 – 40 minutes. They need to completely evacuate the colon in order to remain clean the rest of the day.

Those that manage with enemas (rectal or antegrade) spend, on average, one hour a day with the routine. Most of these kids have more leeway in their diet, although some foods may cause issues.

Managing the child’s bowel needs is and will be a lifelong reality. As the child grows and changes, so will bowel management. If the child experiences soiling, then tweaking of the regimen will be needed. It’s important for the family to find an expert that understands this and that will be there for them throughout the child’s life.

A: In my experience, the majority of the children in China do not receive bowel management. However, if they were fortunate enough to reside in a medical foster care home/program, it is possible that they did receive some bowel management.

Most of the children represented in our support group come home to us very backed up (constipated) which can present itself in one of two ways. The child may appear to be incontinent and stool non-stop. Or the child may not stool at all. Regardless, once home, parents should have the stool tested for parasites to rule out an infection and should obtain an abdominal x-ray to determine if the child is constipated. The large majority of the time, the child is found to be very constipated and a bowel clean-out is needed.

Recommended Resources:

Nationwide Children’s Pelvic Reconstruction Center
Cincinnati Children’s Colorectal Center
UCSF – overview of Imperforate Anus

The post Nothing Else Mattered: FAQs About Anal Atresia appeared first on No Hands But Ours.

Our adoption journey started with two infant adoptions from South Korea, in 2008 and 2010. Our first was a healthy baby boy; our second, a daughter with limb differences. When we considered adding to our family again, we decided to adopt an older child and looked into the China special needs program. We pondered the medical needs checklist helplessly. We had good insurance, but what kinds of needs could we manage on a daily basis with a busy family of six? Could we provide years of possible surgeries and therapies? What kinds of special needs were more “convenient” than others?

At some point along this journey it occurred to us that no matter how inconvenient a special need might be for us, it was infinitely more difficult for a child without a family. We changed our outlook and began doing the research. In particular we felt pulled toward a child with physical special needs. Spina bifida topped our list as we searched photo listings for the child who would be our new daughter.

In June 2011, I found her. She was a 7 year old girl with repaired lipomyelomeningocele, tethered cord, and bowel/bladder incontinence. She lived in an orphanage, and had been there since being abandoned at a year old. A note left with her detailed the anguish her birth parents had felt at watching her untreated spina bifida derail her growth and development, necessitating decisions no parent should ever have to make. Photos of her showed large, sad brown eyes and a shy, fearful disposition. Orphanage notes said she preferred to play alone, and did not allow people to get close to her. Due to her incontinence she was not allowed to attend school, but instead stayed in the orphanage preschool.

However, with overcrowded orphanages, poverty, and short-staffing, children in care in China are unlikely to have these opportunities. Instead, they face a lifetime of shame and separation, where foster families are unwilling to bring them home, schools reject them for the inconvenience and odor, and opportunity for education and social integration is nearly impossible.

As I prepared to travel in June 2012 to adopt our daughter, I considered the challenges that might be involved in managing the incontinence of an older child. Our daughter would have been used to a lifetime in a diaper, without a regular caregiver. Would she trust me? Would she be willing to let me try to help her?

Our adoption day was full of surprises. Our daughter walked confidently into the civil affairs office and sat in my lap. She was shy but sweet as she carefully touched my cheeks and searched my face for clues as to what kind of person I was. She eagerly gave her fingerprint to be adopted and in the weeks that followed, began to blossom!

As she settled in we started the medical workup to assess the range of her needs. It was determined that she could benefit from clear intermittent catheterization and bowel management. One thing that many parents find surprising is how little doctors know about the day-to-day management of these conditions. It’s one thing to learn about incontinence, but another to live it. Most of us find that doctors provide a good starting point for advice on how to manage, but because every child is different, and we ultimately find trial-and-error to work better for managing our kids’ needs.

Over the course of several months, I slowly introduced catheters and laxatives. Our daughter was nervous at first but agreed to try the protocol that was recommended. It wasn’t long until she was dry and wearing underwear, and we were using glycerin bulb laxatives and cone enemas to empty the colon each day. We use the “bucket approach,” which says that the colon is like a bucket. When a bucket is full, it spills over, but if you empty the bucket each day, you have another day to slowly fill it and empty it before it can spill over. This has worked successfully for several years.

In 2013, I happened to come across the story of a young man who was aging out of China’s adoption program. An outgoing, smart, sweet 13-year-old boy, he had imperforate anus as one of a constellation of symptoms related to VACTERL association. His incontinence had led to his abandonment, and it had caused him to be kept out of school and foster care while he spent his life in an institution.

While reviewing his file I was touched by his hopeful smile, and his statements that he would like to be adopted. I cried reading about how, as a result of bowel incontinence, the students’ parents at his school had called for his expulsion. My husband and I considered what his life would look like if he stayed in China, without access to lifesaving medical care and the tools to achieve daily bowel continence. And then, we said YES.

There are some things I’d like to mention that I think are unique to achieving social continence in older children. For example, while we may be anxious to begin the journey toward “fixing” the child, it’s important to take the child’s lead. You may think that incontinence is the end of the world, but it is your new child’s “normal.” I was not prepared with either adoption for how comfortable my children were in diapers. I had imagined that both would be excited and eager to wear underwear and to manage their conditions. Instead, both found it easier to be in diapers, without having to stop to go to the bathroom or to learn new ways to stay clean. However, I always prioritized bonding and building trust over imposing invasive procedures. I made sure that both kids were ready and really understood what we were undertaking. They were willing to try the techniques I introduced, but weren’t overly excited about the goal. There are no words to describe either child on the first day of successful continence. My son was amazed that he, too, could wear underwear like everyone else. It was clear that he had lost hope of this ever happening… and he was thrilled by this development!

On the other hand, I also think that undergoing such sensitive and invasive bowel and bladder management built trust more quickly. I promised them that I would help them to stay clean and feel healthy, which no one in their lives had done before, and I followed through with my promise! We learned together and grew together. We laughed together over messy failures, and celebrated successes together. Catheterization forced us to focus solely on each other at regular points in the day, around everything else that was going on. They opened themselves up to vulnerability and saw that my husband and I didn’t reject them for their incontinence, or disapprove of their conditions, as so many people had.

As time went on and our relationship grew, they both shared some very humiliating stories of abuse and neglect which was cathartic for them. We have always made a point to honor those memories and to treat them gently, and to nurture the present, so they can overcome some of the trauma which resulted from their incontinence.

Children are acutely aware that they were abandoned because of their medical conditions. They have watched other children be adopted while they waited due to their special need. Many, if not most, children have been denied an appropriate education, field trips and excursions, foster care, and warm relationships and have been told in no uncertain terms that they smell, or that they failed to potty-train normally. They have been mocked about their conditions and it is the source of great shame.

In your home these memories will compound the typical challenges associated with older child adoption, which are to be expected as a child settles into life with a new family, siblings, language, food, educational system, expectations, and culture. You will need to gingerly approach social continence without putting your child on the defensive or making the child think you believe he or she needs to be “fixed” to be good enough. You will ask questions about bathroom behavior and your child will try to size up whether you are mocking them. Any accidents will be hidden in anticipation of discipline or scorn.

Eventually, you will realize at some point that the hurt is so very deep, and the child’s self-esteem has been damaged so severely, as you slowly pull apart the layers of your child’s personality. You will realize that incontinence has affected the child so much more than physically, and that so many seemingly unrelated experiences your child has had really stem from the medical condition that put your child in the situation.

You will slowly conclude that long after your child achieves social incontinence, he or she will still remain an “incontinent” or “disabled” child inside, with the stigma and shame, and that it will be up to your lead and your child’s resilience to change this. It will be up to you to patiently rebuild the child’s self-esteem, while showing him that his identity is so much more than what happens in the restroom.

Your future, together, is now.

– guest post by Tracy

The post Older Children and Incontinence, a Family Story appeared first on No Hands But Ours.

When my husband and I were researching the needs of our would be son, we turned to various physicians, websites, and blog posts in search of not only what the diagnosis was and what it would entail medically, but also what the day to day parenting for a child with his special needs would be like.

We found No Hands But Ours to be an invaluable resource of well-educated parents who had been there and done that. With that said, we still had little idea what parenting a child with our son’s special needs would be like, particularly in the first few days, weeks, and months home.

We are currently walking this out with our little warrior and my hope is that this post can be a guide for parents who want to know what the trenches with a warrior like ours looks like.

Our adoption story is long, detailed and, if I do say so myself, a beautiful one. (It can be read in its entirety here.)

The short version is that we waited a very long time and unfortunately said “no” to a few referrals due to medical concerns (both real and potential). Declining a referral is always heartbreaking, and we began feeling the weight of our decisions heavily. Not to say in hindsight that we made the wrong decision with each prior referral. We just never felt at peace with moving forward.

But our lives were about to dramatically change. The day we saw our son’s sweet face… we fell head over heels in love – and his file seemed to only solidify our peace with moving forward. God opened many doors, which in the past would always slam shut, and we decided to move heaven and earth to bring him home. His file contained three known congenital deformities, anal atresia (repaired), tracheoesophageal fistula (repaired), and a bronchial deformity.

In brief, anal atresia (or imperforate anus) is a condition where the anal opening is either missing or located in the wrong place. There are many great articles on this website alone about this condition, so I will defer the medical description to them here.

Our son had his “repair” shortly after he was found abandoned, and later had his ostomy reversed with the creation of an anal opening when he was around six months old. We happen to live in one of the cities with a large, well-known pediatric colorectal surgical center and felt pretty educated on the medical aspect of this condition (again not the day to day life though – that would later catch us by surprise).

His other condition, tracheoesophageal fistula (TEF), is when a connection exists between the trachea and the esophagus. Our son had his “repair” again shortly after he was found.

His third and final known medical defect was a “bronchial deformity”, basically an incidental narrowing of one of the passages of his lungs.

Our son’s file contained the term “repaired” often, and he was described as having no life limitations, no difficulty eating or breathing, took no medications, was active, and best of all potty trained! It all seemed too good to be true, but as we would soon learn ourselves – as well as from reading others stories – some medical files from China may not be technically accurate.

We met our son in a stuffy civil affairs office on a Monday morning in August. He was much thinner than we had envisioned, and we immediately noticed he had a certain smell to him. It became apparent that he was still in diapers at four years old, and despite what his file said…. he was not potty trained at all.

The fact that anyone could have written that he was “potty trained” still continues to blow my mind. Our son almost constantly had a leakage of stool and he would or could not tell us about it. The sheer magnitude of poop we encountered on a daily basis in China was simply astronomical. It was so hard to believe this tiny little 30-pound guy could produce so much poop and I cannot even begin to describe how many diapers we went through while in China.

We were literally up to ears in poop from the moment he woke up to the moment he went to bed and eating made it flow all the more.

His foster mother made an off-handed comment about certain foods she avoided in him, likely due to the diaper change they required. Perhaps this was why he was so incredibly skinny, only wearing 18-24 month clothing the day we got him.

Leaving our hotel room required careful planning as well because nearly every two to three hours, sometimes every hour, and sometimes right after he was cleaned, he required another diaper change. To make matters worse, he hated going to the bathroom and would whine or cry each time we took him. It was clear he was not changed this often before, but as his new parents, we refused to let him sit around in a soiled diaper.

All we wanted was to bond and love on him the way all the books and lectures say to do, especially in China, but our good intentions were leading him to frequently get upset with us. It was heartbreaking and frustrating all at the same time.

Changing diapers was a whole different debacle in and of itself.

We attempted to lay him down, but if you have ever visited a Chinese squatty potty you realize this is a no-go. There is sometimes only a hole in the floor with a wastebasket of used toilet paper and a floor full of other people’s urine, so this clearly was not going to suffice. We tried taking off his pants with each changing which only sent him into more hysterics. Our guide later interpreted that he “wanted pants left on”, so we got creative quickly.

Given all of these diaper changes, his bottom was actually in pretty good condition. I have heard from many mommies that they have encountered severely broken down skin from lack of adequate and timely diaper changes, but we came prepared with lots of creams. What he did have, however, was a portion of his anal opening that was prolapsing out and which bled with nearly every diaper change.

I have to admit that it was all so overwhelming at first, but as the days passed it became more and more routine. We took longer than most people at nearly every place we went because we always had to stop two to three times for bathroom breaks. The other families traveling with us were so patient and kind and offered encouragement whenever we needed it. I am forever grateful for their companionship during those two weeks in China.

Now the reason for this non-stop flow of poop is due to chronic constipation given his anal atresia. Many children have this issue because stool simply does not get pushed out normally due to the defects and subsequent surgeries.

Once home we began a good old fashioned clean out which required not leaving the house or even the bathroom for very long. We are currently undergoing workup at one of the nation’s leading pediatric colorectal centers and will start bowel management week in a few months. This is our son’s best chance at “social continence” meaning that hopefully through dietary measures, medications, and/or possible surgical intervention our goal would be one to two large bowel movements a day while remaining clean for the rest.

Bowel management week is very busy, it will entail an exam under sedation, MRIs of his spine and pelvis, a cystoscopy to evaluate urinary function, daily abdominal x-rays, enemas, and likely a re-do surgery. All of this is elective, so we are currently focusing on attachment and bonding before he goes through all of this, albeit most of which is taking place in a bathroom these days.

We were evaluated by pulmonology (the lung doctors) and an x-ray showed chronic inflammation of his lungs. The inflammation is likely from aspiration and reflux given his TEF. He is set to have a bronchoscopy within the next couple of weeks to further evaluate his trachea and bronchial deformity. Given his “floppy” airway and likely tracheomalacia (again a result of TEF), upper respiratory infections can be very scary and there is a chance of his airway closing.

We have started twice daily inhalers, and nebulizer treatments on an as-needed basis. He also underwent a swallow evaluation to look at how well his esophagus was working. It showed slowing of food passing through his esophagus, a narrowing at the end near his prior surgical sight, and likely reflux. We have started a new medication for the reflux and are set up to meet with a gastroenterologist for further evaluation.

Because our son had two commonly seen/associated congenital anomalies, a workup was initiated for VACTRL association. This acronym stands for a cluster of congenital defects often seen together. We had no indication that our son had any of the remainder defects, but China does not routinely screen children for them all.

Through our chest x-ray it became apparent that our son likely has congenital scoliosis. A renal ultrasound was also completed which showed scarring of his kidneys and one kidney smaller than the other. He may be having reflux of his urine into his kidneys for some unknown reason so, you guessed it, more specialist consults.

We are set up to see renal (kidney doctors) in a few weeks for ongoing monitoring of his kidney function and following with urology for a planned cystoscopy to “have a look around down there”.

What we know now for certain is this, our little “repaired” boy, as our pediatrician commented, “is complicated”.

But would we change a thing knowing what we know now?

We had turned down other referrals due to their scary medical conditions and the possibility of various other unknowns.

Our little boy, turns out, had way more congenital defects than all of the other referrals combined.

Would we say “yes” to all the poop, diapers, breathing treatments, x-rays, specialists, surgeries, all of it, all over again if we knew?

Yes! 100% without question or hesitation. God knew what we could handle, even we didn’t… not until he was in our arms at least.

Now we know we can and will do anything for our little warrior. God has opened doors through our work for increased maternity and paternity leave which were not available when we were looking at other referrals. Our employers also have been incredibly helpful with our schedules and we see our Father’s hand playing a role in that daily.

We, ourselves, have become quite accustomed to changing diapers while standing up, and changing diapers in nearly any and every place imaginable. We are becoming associated with all of the bowel medications on the market, and learning appropriate dosages based on poop quantity and quality.

We have a huge support of mommas on the imperforate anus Facebook page who are a wealth of knowledge and expertise. Our son himself has become a champ at his breathing treatments and is so courageous on medical days.

He is teaching and changing us every single day.

He is the most amazing, strong, stubborn, adorable, smart, challenging little boy we have ever met, and we are so lucky to be the ones to walk this journey out with him.

He walked it alone for so long, and now our warrior has an entire army behind him.
This army is going to do whatever it takes to give him the best life we possibly can.

It scares me to the core to think that, if we had known all of his medical needs, we might have said “no” to him. Thankfully we were given enough to say “yes”, by our Father who knows it all, from the start.

Nothing is a surprise to Him.

He knows what we need before we ever do.

I am thankful for every step in our journey that lead us right where we needed to be.

Expect the unexpected. But don’t be terrified of it.

God does not call the equipped, He equips the called, and we see proof of that daily.

– guest post by Ileah

The post In the Trenches appeared first on No Hands But Ours.

Has this ever happened to you? You’re scrolling through a list of sweet little Chinese faces and suddenly the photo of a completely adorable child jumps right off the screen at you! You read the profile, genuinely intrigued. Then you get to the medical need listed and you think, “I don’t know what that is, but I really don’t feel safe googling those words.” We’ve been there. We can help you with that!

Say WHAT?

China calls it Imperforate Anus (IA) or Anal Atresia. But it’s important to note that US doctors now classify the special need as Anorectal Malformation (ARM). This is a better way to think of it, because the defect is not limited to just the anus itself. It covers a very wide range of severity and usually means that not only is/was there no anal opening, but there are also missing nerves, which then affects the ability of the colon to move waste normally.

After the initial surgery (or surgeries) to get the existing nerves and muscles optimized, almost all kids in this diagnosis classification need some combination of interventions to make sure his or her system keeps chugging along and doesn’t get backed up or off schedule. This help ranges from sticking to a specialized diet, onward to daily laxatives, all the way through doing a daily enema to clean out the colon for each day.

I Get By with a Little Help From My Friends.

We all know how crucial a good “mom village” is to navigating a typical adoption. The camaraderie, support, and commiseration all make the journey to our child more bearable. But when you bring home a child with an ARM, the “crucial” quotient goes through the roof. Seriously, our community of mommas get it like no one else does.

We lift each other’s eyes up off the mess (literally, the mess all over the bathroom floor!) and onward to the future. We remind each other that “it’s just poop.” We cheer each other on through long hospital stays. Accident-free days are virtual parties in our on-line group. Parenting kids with this type of need can be very isolating and lonely. Poop can be a real conversation killer, ya know? In this safety net of support, we normalize the journey for each other – it is very healing and empowering.

In addition to mommas who “get it” and are right where you are, our support group is also full of “Been There Done That” moms. They offer hope for what your new normal will eventually be. They have been through it all and have come through to the other side with children who are living fully, healthy, typical childhoods.

These mommas know this need inside and out. They may not be medical professionals, but they collectively have a shared body of experiences that make them pro’s at keeping a little body moving and grooving “down there.”

It’s like the knowledge of your mini-van that your local mechanic possesses. He’s not the engineer that designed the car, but he’s in there under the hood, and he knows what to try when that screeching, whirring, noise won’t quit. He’s got the tools, he’s got the experience, and he’s got the successful repair rate that shows he knows what he’s talkin’ about.

The BTDT moms are the same. The hope that they represent to new families who are learning and grappling with the steps to their kids’ healthy colons is immeasurable.

Also, we may be biased, but these IA moms have the BEST stories (we often use IA interchangeably with ARM). The “put your coffee down first before you read this” stories. The “laugh until your kids ask if you need to go to your room to calm down” stories. Never thought you could laugh at poop? Didn’t think medical interventions could go wrong so spectacularly? Please, join us! Just put your drink down first.

It’s Just Poop. Except It’s Not.

Here’s the thing.

When parenting a child with imperforate anus, or any ARM, you find yourself developing an amazing immunity to poop.

Really. Trust us.

Paradoxically, to help yourself and your child with daily management, you also must develop a hyper-focus, even an intrigue, about specific details of poop that is unnatural to everyone around you. Sometimes even to your spouse.

Conversations about quality and quantity become commonplace. You’ll be adept at detailed discussions of the volumes, consistencies, and color. Don’t even get me started on what makes the best “tracer foods!” You develop your lingo, you find your groove, and you talk frankly and openly about this topic that so much of our culture finds distasteful. But it’s so very necessary. Daily, large volume, completely emptying poops are vital to our kiddos’ health. To our kids’ successful navigation of the rest of their life beyond the bathroom and the safety of your home bowel management protocol.

Additionally, if you want awesome opportunities for building health attachment with your child, this need is a gold mine of parent-child interaction. Every day you show you care by being interested in their diet and bodily functions.

You think M&M’s games are good for bonding? Try counting partially digested corn kernels together! Nothing shows a kid they are loved unconditionally more than being fascinated by their poop. So, it’s just poop. But it’s so much more than that at the same time!

It’s Not Just What You Know.

While we would never suggest that you skip a file review from a reputable adoption clinic, we also think it’s imperative to have your prospective child’s file reviewed by an expert in the field of ARMs. You cannot learn enough about what other families have learned and experienced. But you must go beyond anecdotal and experiential knowledge of the BTDT mommas – even as fantabulous as our FB support group may be (and trust me, we are!).

You cannot learn too much before you travel about this group of needs. You cannot learn enough about the options and treatments that this child might encounter once home. Pore over the websites (this one is a good starting point!), dig into the research, learn what is typical presentation for girls, what is common for boys. Study up on VACTERL – get familiar with the other needs represented by that association of anomalies. They look and sound scary at first glance but knowledge is power.

The more familiar you become with it all, the more you know what you might face, the more equipped you are to make the best choices for your child. It might feel like you went back to school for a B.S. in poop. (Did ya see what we did there? We’re so punny!)

Trust us. You won’t regret knowing what you know.

It’s Also About Who You Know.

It is necessary at this point to break some news to you: all doctors are not created equal.

Something you learn quite quickly when you research ARMs is that there are not many pediatric experts in the US. Many doctors will tell you they know what to do, but the actual number who have treated enough patients to become good at understanding this complex need, is very low.

It is imperative that you know that this body of needs is not one that just any old pediatrician or even pediatric GI can or should handle. For that matter, you should be aware that there are truly only a handful of skilled, highly qualified and experienced pediatric surgeons in the whole nation who are equipped to handle this need, especially if the file lists the child as “post-op/repaired.”

Here’s why: imperforate anus is a rare defect that has a high likelihood of surgical intervention. On the tail end (pun fully intended!) of the one or two surgeries, will come what is called bowel management.

That means that a surgical repair does not fix everything.

This is not a “once and done” type of special need. But. Don’t let that scare you. But do. A little bit.

Bowel management is the key to your success. Walking through effective and comprehensive bowel management cannot and should not be done by any old GI. Unless you get lucky geographically, you are going to have to travel for care. What you learn is that it’s not as big a deal as you think. After all, you went all the way to China to get this child! Surely you can manage some interstate travel to make sure your child gets the best outcome possible. When you talk to the BTDT moms and hear their stories, you realize that going to the expert doctors first saves time, energy, trauma for your child and a whole lot of stress-eating for you.

These few select specialists and their teams know what to do and have the support systems in place to make your life easier. Getting it right is too important to your child’s overall health, to his or her dignity, and to your family’s success in this adoption. Choose a doctor whom you know will do it right.

We hope that we’ve enlightened you, scared you (just a little bit), entertained you, and empowered you.

They are fighters and, in many cases, survivors.

They deserve the best advocacy and fight their family can offer.

About the Authors:

Daria Dammer and Tracy Whitney met several years ago while carpooling to a regional adoptive moms’ event, before either of their children with ARMs came home from China. They’ve spent the last three years bonding over poop stories, surgical experiences, and a mutual passion for improved parent-preparation and post-adoptive support for all needs within the China Adoption Community. They are now parenting children with ARMs who represent vastly different presentations on the range of ARM needs and have both found their new normal through support and lots of wise-cracking together.

The post It’s Just Poop. Except It’s Not. appeared first on No Hands But Ours.

This post is intended for informational purposes only and is not a substitute for professional medical advice, diagnosis, or treatment.

Poop is a daily topic of conversation in our home. After three years of being in the trenches, I can tell you more than you’d probably ever want to know about it, but it hasn’t always been this way.

When we were reviewing our son’s file I was completely clueless about his special need and had never heard the term bowel management. What we did know was that there was a better than average chance that our son would need some type of bowel management in order to empty his colon regularly and achieve what is known as social continence. I know from experience that the words bowel management can be a bit scary and overwhelming for prospective and newly adoptive parents. With this post I hope to help those who are currently navigating this path and those reviewing files have a better understanding of what bowel management is.

While the reasons a child may need a bowel management program are numerous and varied, the good news is that many successful treatment options exist and when used within a regular bowel management program will allow most children to achieve social continence.

For the purpose of this post I have divided the bowel management protocols into three categories: laxatives, rectal enemas, and surgical.

The first option for bowel management is laxatives. An individualized bowel management program might involve one or a combination of these medications. Commonly used laxatives for bowel management include:

• Stimulant laxatives: Stimulate the nerves in the colon and rectum which causes the muscles in the wall of the bowel to squeeze or contract and move the stool. Examples: sennosides (Senokot, ExLax) and bisacodyl(Dulcolax)
• Stool softeners: Help mix fluid into the stool to soften it. Example: docusate (Colace)
• Osmotic laxatives: Works by increasing the amount of fluid in the large bowel by drawing fluid into it causing the large intestine to hold more fluid which stimulates the bowels. Examples: polyethylene glycol (Miralax), magnesium hydroxide (Milk of Magnesia)
• Bulk-forming: Add “soluble” fiber to the stool causing the stool to absorb more water, which creates larger, softer stools that help trigger the bowel to contract. Examples: psyllium (Metamucil) and methylcellulose (Citrucel)

An enema is a procedure in which a liquid solution is inserted into the rectum to expel its contents.

• Fleet enemas: A brand of disposable, small-volume enemas that come in several forms. Fleet saline enemas work by drawing water into the colon to soften the stool to help produce a bowel movement. Fleet mineral oil enemas are a lubricant laxative that coats the fecal contents to prevent water from being absorbed out of the stool. Fleet bisacodyl enemas work by directly stimulating the intestine to increase the rhythmic action that pushes feces through the bowel.
• Suppositories: Similar to enemas in that they are inserted into the rectum, but differ in that they are small capsules or applicators containing either glycerin or bisacodyl which work to promote a bowel movement.
• Large volume balloon enemas: Consist of a preset large amount of either water or saline along with a certain amount of irritant (glycerin, castile soap, baby soap) that causes the colon to contract and evacuate the stool. Large volume balloon enemas are administered using a gravity/kangaroo feeding bag and foley catheter with balloon. The bag is hung from an elevated position and the fluid is placed in the bag. The catheter is connected to the bag tubing and is inserted into the rectum and the balloon inflated. The valve on the bag tubing is then opened allowing the fluid to slowly flow into the colon. The inflated balloon acts like a plug and keeps the fluid from leaking back out. When it is time to release the fluid the balloon is deflated and the fluid and stool are expelled. (administration video)
• Large volume cone enemas: Similar to the balloon enemas in that they consist of a fluid bag, tubing, a large volume of saline or water, and an irritant. The difference is instead of a balloon catheter, a plastic cone shaped tip is used. The cone is inserted into the rectum and the fluid permitted to flow in. The cone acts as a stopper to keep the fluid in the colon until all of the solution has flowed in, at which point the cone is removed and the fluid and stool are evacuated. (administration video)
• Peristeen anal irrigation system is similar to large volume balloon enemas in that it uses a large volume of fluid, a specialized catheter with a balloon, tubing, and a bag. The Peristeen does not however rely on gravity to introduce the fluid into the colon and instead uses a pump system. Unlike the other two types of large volume enemas the Peristeen system is designed to work with water alone removing the need for added irritants. (Peristeen informational video)

Malone Antegrade Continence Enema (MACE, Malone, ACE, appendicostomy)

An appendicostomy, or Malone, is just another way of administering an enema that is done for children who need an enema every day to stay free from stool accidents and. A Malone procedure (MACE), is a surgery that makes a pathway from the colon to the belly button or other location on the abdomen. With the Malone procedure, the enema is given from the beginning or top of the colon via the created pathway, instead of up trough the rectum, and stool is evacuated from the rectum with the enema fluid. This type of flush is essentially from the top down, rather than bottom up.

Sacral Nerve Stimulation (SNS, or Sacral Neuromodulation)

Sacral nerve stimulation is a promising new therapeutic modality for pediatric urinary and fecal incontinence, and chronic constipation in children when other treatments have been unsuccessful. The technology can be compared to a pacemaker for the heart, but instead, it provides stimulation to the anal canal area, lower part of the colon, and the bladder.

In addition to helping children with urinary and fecal incontinence, and chronic constipation, sacral nerve stimulation has proven successful in some children with anorectal malformations, Hirschsprung disease and certain forms of spina bifida (source: Nationwide Children’s Hospital).

Nationwide Children’s Hospital (Columbus, OH)
Children’s Hospital Colorado (Denver, CO)
Seattle Children’s Hospital (Seattle, WA)
Boston Children’s Hospital (Boston, MA)
Cincinnati Children’s Hospital (Cincinnati, OH)

The post The Scoop on Poop: All About Bowel Management appeared first on No Hands But Ours.

The term special needs can sound scary. But it doesn’t have to stay that way. Our goal at NHBO is to equip and inform parents – replacing fear with knowledge – as they navigate the beginning stages of special needs adoption. And then encourage and support those home with their special needs kiddos.

We do much of this through our Family Stories. In addition to our regular content, each month (except January) we feature Family Stories focused on a specific group of Special Needs. Here are some links from previous years organized by category:

February: Heart – 2017 || 2016 || 2015
March: Blood Conditions – 2017 || 2016 || 2015
April: Central Nervous System – 2017 ||2016 || 2015
May: Vascular – 2017 ||2016 || 2015
June: Orthopedic – 2017 || 2016 || 2015
July: Craniofacial – 2017 || 2016 || 2015
August: Infectious – 2017 || 2016 || 2015
September: Skin Conditions – 2017 || 2016 || 2015
October: Developmental – 2017 || 2016 || 2015
November: Urogenital – 2017 ||2016 || 2015
December: Sensory – 2016 || 2015

November is our month to focus on urogenital needs. And all month long, we’ll be featuring family stories of children with needs like anorectal malformation, cloaca, hypospadias, ambiguous genitalia, and VACTERL.

Over the years, many family stories related to these special needs have been shared. And – during this month focusing on skin conditions – we wanted to take a moment to look back at just a few of our favorites.

Let’s go.

Anorectal Malformations

In this post from 2016, mom Ileah shares the joys and struggles they had in the days, weeks and months following their son’s adoption.

Read more NHBO posts on this special need here.

Cloaca

In this post from 2015, Stephanie, mom to two daughters with urogenital needs, shares her answers to questions about parenting a child with cloaca.

Read more NHBO posts on this special need here.

Cryptorchidism

An anonymous mama tells her story to adopt a son with undiagnosed cryptorchidism (along with other urogenital needs) and how they have navigated the challenges they faced as a new family, one day at a time.

Read more NHBO posts on this special need here.

Hypospadias

Past contributor, Kam, shares the successes and challenges of walking through numerous surgeries her son had to endure to repair his hypospadias.

Read more NHBO posts on this special need here.

Incontinence

Regular contributor, Jennifer, put together a hugely informative post for families parenting children with incontinence.

Read more NHBO posts on this special need here.

Underdeveloped/Ambiguous Genitalia

An anonymous mama shares her story of adopting a daughter who. once home, was diagnosed with a DSD of Congenital Adrenal Hyperplasia.

Read more NHBO posts on this special need here.

VACTERL

The most common heart defects seen with VACTERL association are ventricular septal defect (VSD), atrial septal defects (ASD), and tetralogy of Fallot (TOF).

Past contributor, Amy, recounts their family’s journey to adopt a little girl with numerous acronym-ed special needs, including VACTERL.

Read more NHBO posts on this special need here.

The post November Special Needs Highlight (and Favorite Family Stories): Urogenital appeared first on No Hands But Ours.

When we are researching special needs we usually get the big stuff covered: medical necessities such as surgeries, procedures and therapies. Once we check those boxes we feel we are “good to go” and will figure out the rest on the way. At least that’s how I am!

We have a son diagnosed with VACTERL association. This was not in his adoption file but instead a slew (yes, a slew) of various medical needs that all added up to VACTERL diagnosed by a doctor once we were home. We understood the surgeries and knew how to manage the need but, of course, things come up that make you say, “I never thought about this!”

One of those things for us has been traveling. Anytime we travel, whether it’s overnight for a reunion, a few days at the grandparents’ house or a week for post-op visits, we have to pack “everything plus the kitchen sink”. Now I will say, every child with VACTERL is different and this will look different for each family. For instance, my son has the V, A, C, and R components of the association. VACTERL stands for vertebral defects, anal atresia, cardiac defects, tracheo-esophageal fistula, renal anomalies, and limb abnormalities. People diagnosed with VACTERL association typically have at least three of these characteristic features. So a family that has a child with the “T” component might have extra or different supplies to bring on a trip.

Potty Seat – we have forgotten this before and poor kid had to do the “China squat” so he wouldn’t fall into the toilet.

Tray table – most hotels have a mini table that can be moved into the bathroom so sometimes we don’t bring this. It’s very bulky so we try to if we don’t have to. Plus it’s not 100% necessary but it’s nice to have a surface to play on if you’re sitting on the toilet for an hour!

A step stool – if your child’s feet don’t touch the floor then it’s nice to have a stool to rest them on to prevent them from falling asleep. That can be uncomfortable! But we’ve recently started leaving this off the list and finding other ways to prop up his feet. Like a suitcase!

Items of Entertainment – this can be an iPad/tablet, coloring books, puzzles, Legos, etc. It’s just nice to have items that help pass the time instead of staring at a bathroom wall.

Enema bags – along with a wire coat hanger to hang the bag, or Command Damage Free hanger hooks. These can be very helpful to have on hand!

We always carry an extra backpack that serves as a “medical bag” in case we are gone all day long as well as keep extra supplies in our car. I like to advise families to keep an empty water bottle in their car in case you need to cath while driving. (I have crawled in the backseat many of times and helped our son out when there was nowhere to stop and get out.)

While my son and others diagnosed with VACTERL may always have to be thinking one step ahead on managing their need on a daily basis, there is no reason they cannot live life to the fullest! We treat this need as his “normal” and treat his management as just a part of his routine like brushing his teeth or getting dressed.

Sometimes our son will start to feel sorry for himself and see all the extra work everyone goes through. He doesn’t “get” why he was made differently. I choose to tell him everyone is made differently and we just have to “rock” what God gives us!

We are so blessed to be his parents and keep pointing his mind in that direction.

– guest post by Stacie: email || Facebook

The post Life with VACTERL: Staying One Step Ahead appeared first on No Hands But Ours.

I can say with certainty that becoming a mother has been the most unique experience that I’ve had in my life thus far. That sentence sounds strange to me as I write it because people becoming parents is maybe the oldest and most common experience known to the human race. We still exist after all.

For me, it is the most unique for two reasons. Firstly, I cannot compare it to anything else and secondly, I would never have understood what it meant to be a mother until I became one myself.

Like anyone, I had ideas and expectations of what early motherhood would look like for me. I am just beginning this journey, as my daughter is only six months old now. I have yet to parent through the toddler stage and, God help me, the teenage years. Many told me that being a mom would be the hardest thing I’d ever do but also the most rewarding. So far, I can generally agree with that statement.

Mary Clare is the greatest joy that both my husband and I have ever known.

There’s a quote that decorates a wall in my obstetrician’s office that reads, “To have a child is to decide forever to let your heart go walking around outside your body.” I read it every time I sat there waiting but it didn’t fully resonate until my brand new, little baby was taken away from me and rushed to another hospital due to breathing difficulties.

Not even 24 hours after she was born, the doctors were concerned that she was coughing quite a bit and producing a lot of mucus. Her heart rate was elevated and her skin had a blue hue. She was transferred to the NICU downtown while I, not even 24 hours post-partum, had to stay at the hospital where I’d given birth to her.

When she arrived at the NICU, the chief of pediatric surgery quickly diagnosed her with VACTERL syndrome, an acronym for a grouping of defects where three of more medical defects are found together. The “T” stands for tracheo-esophegeal fistula (TEF) and was the most urgent and serious issue found. She had surgery soon after the diagnosis to correct the TEF and has done tremendously well ever since.

Besides the medical drama, the challenges of motherhood come in forms that I didn’t expect. The lack of sleep for one. My college years were actually quite stressful, and having taken on too many difficult classes and extracurriculars, I am happy to be done with that part of life. Living in China was very frustrating at times; language barriers, pollution, miscommunications, etc. I thought “hard” meant things of that nature. What surprised me was that motherhood was difficult in that I was lonelier as a new mom than I’d ever been before. At the same time I absolutely adored my newborn baby. The highs and lows were extreme.

The most significant influence that my becoming a mother has had on my view of adoption is a greater appreciation for both my adoptive parents and my biological parents.

That quote on my OB’s wall is true for parents whether their children are biological or adopted. A little person becomes part of a family and they are forever stitched into the fabric of our lives.

I hear adoptive parents express that they did not “save their adoptive children” and I think that it’s not a bad attitude to have. It speaks of their humility and unconditional love. My parents say the same. At the same time, I do believe that the adoptions of both my sister and me were heroic (in the same way that I think having biological children is heroic) and I’m not afraid to say that in a way they did “save” us. It was God’s plan to bring our family together and they were not afraid to say yes to Him.

A quote that circulates around social media within the adoptive community quite often reads, “A child born to another woman calls me mom. The depth of the tragedy and the magnitude of the privilege are not lost on me.” Again, this quote speaks truth to me more now because I personally understand the privilege that motherhood is.

In the same way that I couldn’t imagine losing my daughter because of her health issues, I could not imagine having to give her up for adoption for one reason or another. Maybe the latter would be even more painful knowing that she were still living in the world and I couldn’t be with her.

Adoption is so beautiful because it brings healing and redemption not only to children but parents as well. What begins as a tragedy unfolds into a story of love.

When my daughter turned four months old, I faced a heart wrenching reality. I had been caring for this child for four months, spending every moment together, feeding her, bathing her, sleeping next to her, and watching her grow and learn. Four months… sounds like such a short time but felt like an eternity.

At four months old, I had been separated from my birth family. I wonder why I was kept for those four months. What event, what situation changed that? I was left at a train station and I imagine heartbreak, utter despair but I just don’t know for sure.

I know that some adoptive parents worry about over romanticizing birth parents. I think that’s a valid concern. Prudence should be exercised when considering such emotional and sensitive topics.

It’s only natural that we (adoptees) would fill in the gaps of our minds with the best of hopes. I am only now able to think somewhat critically about this issue. There is a need to protect adopted children and safeguard their hearts against over romanticized, self-created ideas about birth parents. At the same time, we must understand that they will wonder and fanaticize about what might have been.

So how to talk to your child about their birth parents? That’s a good question. One that I’m not sure I can answer alone. My parents told my sister and I that we were loved by our birth parents.
Did they know this with certainty? No.
Did we believe it and did it make us feel good? To a degree, yes.
Was it the right thing to say? I don’t know. But I don’t think that it was harmful.

Navigating this topic is different for every adoptee and every family. Maybe you do know the circumstances surrounding your child’s adoption. Maybe they have a tragic story. I think that honesty is a good policy considering that a child is emotionally mature enough to process the truth.

What our children should know with certainty is that they are unconditionally loved by us and wanted by us. I never doubted that those two things were absolutely true coming from my adoptive parents – and that has made all the difference.

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