Prologue to Kaden – Part 3 – Screening Tests

After the initial diagnosis of bilateral cleft lip and palate at the 20 week ultrasound, our obstetrician suggested that we speak with a geneticist right away to learn more about the genetic implications and chromosomal “anomalies” associated with clefts. The doctor suggested this all be done immediately because we would not have the same options under the law after 24 weeks. Although I don’t recall whether he ever actually said the words, the meaning was clear: have an amnio so you can decide whether to terminate the pregnancy.

My husband and I were in such a fog that we got on the wrong train going home that day. My husband didn’t want to see a geneticist and wouldn’t even consider getting an amnio. This surprised me a bit because we’ve both always been very strongly pro choice. The thing was that Kaden was not a concept or a political principle. Kaden was his baby and he already felt strongly connected to him. He never wavered in his belief that Kaden was meant to be with us.

I didn’t know how to feel. I wanted to know but I didn’t want to know. The enormity of the decision we were about to make was staggering. Paralyzing.

I decided to see the geneticist and was not entirely sure my husband would be there until I saw him in the waiting room. I had a few questions that I needed to ask, the most important of which was whether there would be anything we could do in utero to help Kaden if an amnio detected a problem. The answer was no. Score one point in the “no amnio” column.

In a nutshell, the geneticist explained that in approximately 80 percent of cases a cleft is an isolated anomaly and there are no other issues. In roughly 10 percent of cases, cleft babies have one or more significant genetic anomalies that can have a wide spectrum of severity. Finally, in another 10 percent of cases there is a chromosomal anomaly such as Down Syndrome, Trisomy 13 or Trisomy 18, all of which can cause severe mental retardation, physical retardation and/or death. Although an amnio would be useful in identifying chromosomal and/or genetic anomalies, it could not rule out all potential syndromes or impairments. Also, the amnio would not indicate the severity of any conditions it detected, only the mere presence of the anomaly.

Prior nuchal transluceny screening, which was done at about 12 weeks, indicated that Kaden’s risk of Downs Syndrome, Trisomy 13 and Trisomy 18 were approximately 1 in 10,000, a very low risk level for my age. The geneticist told me that the presence of the cleft invalidated those results. Basically, Kaden’s cleft made it far more likely that this pregnancy would be that 1 in 10,000.

After wrestling with the million conflicting thoughts and emotions that flooded my brain as we sat in the geneticist’s office, I apologized to my husband and said I hoped he understood that I just needed to have the test (he did). I signed a consent form and waited with my husband for the doctor to call my name. My heart raced. I began sweating and felt the first pangs of a panic attack. I grabbed my coat, told the nurse I’d changed my mind and practically ran out of the office.

I never looked back. Not once. As difficult as not knowing would be, deep down I felt the same way my husband did. I desperately wanted to have the test and receive positive news. But what if the news wasn’t good? Well, I knew that I still wanted to have Kaden but I didn’t know if I could bear another 4 months of pregnancy, labor and delivery under the tremendous weight of a Down Syndrome or Trisomy diagnosis.

For the first time in my life, I had to completely surrender control of my fate to the universe . . .

Prologue to Kaden – Part 2 – Diagnosis of Cleft Lip and Palate

Our story continues at the 20 week sonogram. I’ve attached a sonogram picture from then so you can see things the way we did at the time . . .

We went to see our obstetrician and have the 20 week sonogram in January 2008. For anyone who has not had a 20 week sonogram, it’s the big one, the one where the doctor basically does a survey of the baby’s body and organs to determine if things are “normal” or if there are “anomalies”. I use the words “normal” and “anomalies” intentionally; they soon became obnoxious and intolerable to me. The first time around the sonogram technician was smiley and lighthearted, telling us things looked great and that we were having a boy. She called in the doctor to review and he informed us that all looked fine but we needed to come back the following week because he couldn’t quite make out details of the baby’s face due to the fact that his tiny little fists were balled up in front of his face. My husband picked up on a hint of hesitation and a look of concern in the doctor’s face and asked if he saw a cleft. The doctor said that he couldn’t say one way or another if there was a cleft because he just couldn’t see the baby’s face. I remember remarking that it wouldn’t be the worst thing in the world if the baby had a cleft, that was fixable, and the doctor agreed.

We left the office feeling happy and relieved that all seemed to be well with our little one. Secure in the knowledge that we were having a boy we agreed on a name, Kaden, in honor of my husband’s father (also a “K” name) who passed away when my husband was a small child. We mooned over the sonogram picture --- “Kaden has daddy’s legs” I remember saying. We were already completely in love with our little one and making plans for a great future together.

I knew something was wrong immediately at the next sonogram appointment. The technician was somber, quiet, she kept looking at the baby’s head – but not at his face – she kept reviewing and measuring his brain and his heart. I asked if she saw anything unusual and she didn’t answer. I said “I know you need the doctor but . . .” She cut me off with “I can’t say anything. I have to get the doctor.” She walked quickly out of the room. My husband and I exchanged a few nervous glances. He squeezed my hand.

The doctor entered the room and, without a single word to us, began looking at the same things the technician had: the head and the heart. After what felt like an eternity he told us that our baby would have a bilateral cleft lip and palate. I felt relieved to hear that was the only problem he saw but perplexed at all the measuring I saw of the heart and the brain. The doctor told us that in most cases a cleft lip and palate are isolated anomalies and the babies are otherwise healthy and fine. However, he then told us that in about 20 percent of cases cleft lip and palate are indicative of more global genetic or chromosomal anomalies, some of which are “not compatible with meaningful human life” and suggested that we have an amnio and speak with a geneticist to determine if we should move forward with the pregnancy.

Sucker punch. That’s the only way I can describe the way I felt. I didn’t know much about cleft lip or cleft palate but that wasn’t really what I was worried about. Not compatible with meaningful human life? Really? Had that phrase just been used in any sentence about my baby? Amnio? Geneticist? Oh God . . .

Prologue to Kaden – Part 1

Before we go any further, I feel it’s important to go back a few steps and tell the story of how we got where we are today. First of all, the story of Kaden cannot be told without some mention of the extremely traumatic pregnancy that led to the miracle of his birth. Second, his mommy is somewhat of a frustrated writer who’s probably never going to actually write that memoir she’s been contemplating since age 12 and she could use a little cathartic release at this point. Finally, and most importantly, it’s possible that someday another woman who is going through an extremely difficult pregnancy (perhaps involving cleft lip and palate) will happen upon this blog and take some comfort in knowing that she’s not alone – the way I did when I searched the internet for something (anything) that would make me feel a little better during the most gut wrenching and transformative time of my life.

Briefly, here’s the back story. Kaden’s father and I met in college 12 years ago and have been together ever since. We’re both lawyers, though I no longer practice, and we finally settled down in New York after several years on the West Coast. Though I always wanted to have children in a vague sort of conceptual way, there always seemed to be just a few more things we needed to do before I would be “ready” to be a mother.

We found out that I was pregnant in November 2007. I thought I had a virus. My husband looked at me with a big smile and said “You’re pregnant. I bet you.” He was right. Though it took us by surprise, we were both extremely happy. I had all these neurotic reservations up until the time I knew that I was pregnant. They all just melted away in the fog of happiness that ensued. We did all the nauseating things that expecting couples do: talked to my belly, bought baby name books, made plans to convert the spare room into a nursery. I remember going out to dinner with my best friend when I was almost 5 months pregnant (just starting to show) and telling her how extremely happy I was, how, for the first time in my life, I was feeling totally and completely happy. I should have known to be suspicious. Things were just feeling way too good . . .

First Post

Our beautiful little Kaden was born on June 20, 2008 with a bilateral incomplete cleft lip and palate. This blog is for him and will chronicle our journey with our very special and amazing little man.

As first time parents we're learning a lot, particularly in the area of cleft treatment and repair. Kaden is a patient at NYU Medical Center in New York City and is receiving treatment from an amazing cleft team that includes Dr. Court Cutting, Dr. Barry Grayson and Dr. Larry Brecht.

Kaden's treatment began just three weeks after he was born with the insertion of a molding device called a "NAM" (which is an acronym for Nasoalveolar Molding Device). He is scheduled to have his first surgery to repair his lip, gums and nose on November 17th, 2008. As we understand it, this surgery will be the first step in a treatment process that will include additional surgery, orthodontia and speech therapy.

This is where Kaden's cleft repair process begins . . .