Une Envie de Sel

Corner view: Contrasts


I can think of plenty of photo layouts for this corner view, but I thought I'd address this one by way of a story. I actually wrote this post for a website addressing special needs adoption, but it seems appropriate here. The contrast between the experience of giving birth to a child with severe medical needs and choosing to adopt one is something I never much considered before bringing our daughter home. But our first experience at the cleft lip and palate clinic was something of an eye-opener: QQ between her first and second surgeries

Possibly the most unexpected revelation in the course of our special-needs adoption came when the three of us, my husband, our daughter and I, waltzed in to our first cleft clinic at the hospital we had chosen for our daughter’s surgeries, eager and full of anticipation. At the time, we had been home for just five months and our daughter had been through only the first of two major surgeries to begin repairing her clefts. During the clinic, her first surgery would be evaluated by five or six different specialists, and a plan laid out for her future surgeries, speech therapy, and dental work.
QQ shortly after coming home from China, still rather weak and atrophied, and learning to adjust to a new and strange existence halfway round the world from her birthplace.

When we met QQ, she was 11 months old with a very broad unilateral cleft lip and palate. Rather atypically, she had not had her lip surgery done while still in China, so her entire cleft was still wide open. When she smiled, which she did frequently, the gap was nearly an inch wide. Once home, our chosen surgeon felt the timing was optimal to close her palate as soon as possible, and so we had her first surgery done just two months after coming home. That first surgery included a complete closure of the hard and soft palate (very successful, with no fistulas or tears post-surgery) and a partial closure, or “tacking” of the lip. Our surgeon chose not to close the lip entirely on that first visit in order to let the muscles relax into their new position, thus hopefully allowing for a more successful closure on the second visit. Our surgeon felt this was the best method based on the rather extreme width of our daughter’s cleft and the fact that it had remained unrepaired for almost a year. Her second surgery, and the full closure of the lip, would happen in the early spring, some six months later.
QQ during her first two months at home, lip and palate still unrepaired.

When we walked into that first cleft clinic, it was with a giddy sense of anticipation. We were almost goofy with the joy of our new family and the plans we were making for the future. The first surgery had been difficult for all of us - a long, sleepless night in the hospital, and three solid weeks of medication and sleep deprivation to follow. In spite of that, the whole adoption journey had been such a wild, spinning, joyful adventure that even something as grim as planning for future surgeries made our cheeks ache with spontaneous smiles. It isn’t that we didn’t take the process seriously - oh, we did! Like avid freshman on the first day of college, we were eager to take copious notes, do thorough research, pay attention to every detail, and carry out the doctors’ orders like the good students we so genuinely hoped to be.

So it was a bit of a shock to us to walk into a conference room and find ourselves in the thrall of a distinctly funereal atmosphere. Immediately, we tried to adjust our faces and sober our attitudes to fit the general mood. Something was definitely amiss, but, in the haze of our post-adoption bliss, we were hard-pressed to put our fingers on what it was.

QQ a month or so after her first surgery, lip still only partially closed.

As the discussion portion of the clinic began and progressed, we quickly came to realize that this portion, prior to the surgical consultations, was something like a supervised therapy session. Hospital employees were scattered among the families at the long conference table, opening up topics and venues of discussion. For comfort, a banquet table was set with sandwiches and juice bottles. Grievances were aired, and families were encouraged to share their struggles and fears.

In the thick of that forum, my husband and I found ourselves at a loss for words. As other families talked of their turbulent therapy sessions and post-surgery snafus, their grief over their child’s condition, and the long process of coming to terms with it, we found we had nothing to add. We would have been well-prepared to share the vast and myriad pleasures of our early months with our new daughter, our amazement at our good fortune and the rampant joy that she had brought into our lives. But our contributions seemed irreverent in the face of the angst that we saw in the grim, exhausted faces of the parents around us. For these families, giving birth to a child who would need years of surgeries and therapies was profoundly traumatic. For us, having chosen this child and her condition, it was the greatest gift of a lifetime. What a contrast! What a revelation.

We were, on this particular occasion, the only adoptive family in the group. All of the other children attending the clinic were biological, and many of the parents had been unprepared and even unaware during the pregnancy that their child was afflicted with a medical condition. Some of them spoke of the easy time they had had with their first “healthy” children, and what a shock it had been to find that their youngest was to be born with medical issues. Some of them spoke of the initial shock and subsequent lengthy grieving process they went through when they were informed of their child’s condition.

This was the first time it had ever occurred to me what a vastly different experience it is to deliberately adopt a child with a medical need, as opposed to giving birth to such a child. I had never considered the variance in perspective, and it took me by surprise.

To be honest, my husband and I made the decision to adopt a special needs child without a great deal of struggle or deliberation. Though we began our adoption journey in the “traditional” program, we switched into the special needs program just days after our dossier was logged in to the Chinese system. We had not initially researched or even been aware of the special needs program, and it had never occurred to us that children with medical needs would be separated into a different category. Once we learned of the medical needs program, we made the switch within a matter of days. It seemed right. It seemed logical. If children with medical needs were going to have a more difficult time finding families, and if we were prepared to do so, there was no question in our mind that we should choose one of these.

We had good medical insurance, a terrific support system, medical professionals in the extended family, and a stable home life. We knew that, even if we were to adopt through the traditional program, we would run the risk of our child having undiagnosed medical or developmental issues. We also knew that, had we chosen to give birth to a child, we would have run a similar risk. I myself, healthy and vigorous and athletic as I have always been, was diagnosed with cancer at the age of 29. No one could have predicted it. It was a rough year of surgery and chemotherapy and several months of recovery, but I survived it. It was not the end of my world...far from it. So to adopt a child with a preexisting medical condition, one we had researched and were prepared for, seemed to us a very sane and logical route.

When we saw our daughter’s photograph for the first time, we felt incredibly fortunate. Yes, her cleft was wide and might present some surgical challenges, but she was otherwise healthy and vigorous, and the grin on her face in those first photos foretold her joyful and open nature. When we made it through the process, the paperwork, the wait, the red tape, and actually found ourselves in China with this amazing child placed in our arms, we felt like we had won the lottery.

I really had never stopped to think what it would feel like to give birth to a child with such a condition, with no preparation, without having chosen that route, done the research, understood the consequences.

I do understand that not everyone who adopts a child (with or without medical needs) has as easy a transition as we have had. I do know that we are fortunate in many, many ways. We bonded, the three of us, without a ripple. Our child is a happy soul, confident, social and loving. She walks lightly on the earth and sees the best in life. Not every adoption goes so smoothly for all involved. But I do see our daughter’s condition as a great gift - the one thing without which she might never have entered our lives. Why her birth parents were forced to give her up we will most likely never know. It may have been a cultural stigma that made it difficult for them to raise a child born with a cleft. It may have been the medical system in China, and their inability to afford the surgeries and therapies involved. No matter what the reason, I can’t help feeling incredibly, profoundly, miraculously fortunate that this particular child calls us her parents.

Our daughter will, at a conservative estimate, need a dozen surgeries (both major and minor) before the age of 20. She has currently been in speech and eating therapy for more than six months, and will most likely need therapy for months and even years to come. But far less than being a burden to bear for us, her condition is the one element that made it possible for her to be our daughter, and for that I will be forever, infinitely, and joyfully grateful.

- Maia

More Corner View links at Dana's blog. Corner View source: Jane.

update: Francesca's comment about the unconditional love of birth parents in the ICU made me realize that I need to explain a little more about the cleft clinic, and why it is sometimes a grim day for families of children born with this condition. I don't want you to think that these parents were bemoaning their children. In fact, I think there's a good chance that if Q's parents had been able to handle the cost of her medical condition, they would not have wanted to give her up, and I ache for the decision they had to make, because I think a parent does love a child unconditionally from the start. The idea of having to give that child up, for whatever reason, is unthinkable.

What you should know about the cleft clinic is that it is the one day out of the year on which the family consults with the entire team of medical professionals who will be treating that child over a lifetime. Cleft is not a life threatening condition, and it does not normally affect other aspects of the child's development except for speech, so in that sense it's straightforward. It is however an extremely complex condition to repair, and requires specialists from a number of different disciplines at different stages of the child's life. Talk to the plastic surgeon who does the initial repair, and you will only get a very small fragment of the whole surgical picture. As the years pass, the child will need surgeries to place and replace ear tubes, a bone graft to replace the gap in the bone at the gum line, followed by complex and extensive orthodontic procedures and dental implants. The teeth are always a concern since enamel tends to be thinner on teeth surrounding a cleft, which means vigilant dental care for life. There will likely be surgical revisions to the mouth and/or nose as the child continues to grow. There may be revisions to the soft palate needed if speech does not develop well. Then there is eating therapy early on, and the weekly speech therapy which can last for years. And all this is for a straightforward case of cleft lip and palate (there were children in our clinic who had far more complex conditions, as well).

So realize that on this day, parents were meeting with a team of six to ten different specialist and receiving a rundown of the numerous surgeries, revisions and therapies that they would be facing over the next two decades. They were contemplating rafts of medical bills (yes, even with very good insurance, this is extremely costly). The new parents, those whose first clinic it was, would be hearing the bulk of this for the first time, since most people assume that a cleft surgery is a single surgery or maybe two. I met a boy with a bilateral cleft at one of our meetings who, at ten years of age, had already had 18 surgeries. This is a lot to take in, especially for a new parent who has not done all the medical research ahead of time and was unprepared for the complexity of this condition.

We, on the other hand, had had more than a year of waiting in which to do our medical research, join cleft groups online and listen to the process firsthand. We had seen post-surgery photos on the blogs of friends within the adoption community, and watched those children rally and recover. We had already been through most of the major mental blows, and come to terms with them. We had contemplated the worst case scenarios, heard firsthand about complications and snafus. So...well, I hope that explains the contrast here a little better.