By Erin Schwartz
My husband, Joe, and I had been married 16 months when we found out that we were going to have a baby. I was ecstatic! I called Joe at work because I couldn’t wait for him to get home to tell him. This was something that we both had wanted and we were thrilled. I immediately called my OB, Dr. Elizabeth Moore of Henderson, NV, and scheduled my first appointment at eight weeks. At this appointment she told us that our expected due date would be Dec. 15, 2005. Over the next few months, the date changed a few times but it was finally set at Dec. 17. To me this was perfect. I am a teacher and the 17th was the first day of winter break, so the original plan was to work right up through the 16th. However, this was not Anthony’s plan.
At this point I was feeling great. No morning sickness or fatigue, but I did unfortunately suffer from food poisoning. I was about 10 weeks when we went to a very well known French restaurant on the Las Vegas strip (which will remain nameless) for a nice dinner with a business associate of my husband. Later that evening it hit me and my initial concern was the baby. I knew how crucial these weeks were, and Joe took me to the hospital. We got a glimpse of our baby, which looked more like a peanut, and everything was fine. I was out of commission for 24 hours and things were back to normal. My next OB visit was scheduled for June 13, my husband’s birthday. Unfortunately, he was out of town on business. I was now 13 weeks. Dr. Moore did an in-office ultrasound and scheduled a more in-depth ultrasound with a specialist at Desert Perinatal with Dr. Van R. Bohman of Las Vegas. Dr. Moore routinely schedules these visits to check the development of the baby. At this appointment we would find out the sex of our baby. Would it be Anthony or Mia? We couldn’t wait!
July 6, 2005
Today is the day of our appointment. I was so anxious that I could barely sleep. Joe and I got up early that morning and headed right to Desert Perinatal. Everyone back home (Cleveland, OH) was anxious too. I was leaving that very afternoon for a visit back east and my parents were picking me up from the airport. I told them that I wasn’t going to call them after our appointment and they would have to wait until I landed to find out what we were having. If we were having a boy, then I would be wearing a blue shirt. If we were having a girl, my shirt would be pink. That was the plan anyway. So we’re sitting in the waiting room and we finally get called back. The nurse took us right away and began the hour-long ultrasound. She explained that she would tell us what she was looking at and that when she was finished the doctor would come and speak with us; all very routine. She was showing us his stomach and heart and then she showed us his face. Being first-time parents, this was all very new and only half of the time could I make out what she was describing. As she was casually talking about the brain she moved down to his face and nonchalantly said, “looks like a cleft lip and palate… by the way, it’s a boy.”
WHAT????? It didn’t even register for us that we were having a boy. My mind was stuck on those few words cleft lip & palate. What does that mean? How did he get it? Is this my fault? Are you sure? Is it severe? We cried. I can’t even remember the rest of what she said. My mind was on overload and I felt sick. I held my husband’s hand as I lay on that table and just cried. Dr. Bohman came in and gave more details and spoke with us about Anthony’s cleft. He briefly discussed feeding concerns and other possible special needs. He explained that they could run tests on my blood to determine other disabilities and we agreed. As he was mentioning all of the possibilities, two words that no parent wants to hear were uttered: “Down Syndrome.”
Of all the things that he mentioned, this was the only one that I remember. With the blood work they could get a pretty good result, but not as definite as an amniocentesis. We had a decision to make: should we or shouldn’t we? We left the doctor’s office that day feeling shocked and weak. This was not how we imagined the appointment to be. We held each other and cried the entire way home. My T-shirt plan at the airport was now out the window and I was on the phone with my mom crying. I can’t remember what we said to each other during our very short conversation but I do remember this, “Erin, God gives special babies to special people.” These words are what got me through the next few months.
As soon as we got home, Joe began doing research on the computer and brought up several illustrations and photos. I couldn’t look at them. In fact, it took me two months before I could. I had debated canceling my trip that afternoon and staying home with Joe because we were both very emotional and needed each other, but he assured me that he was OK and I left for Cleveland a few hours later. At the airport I was alone, and nothing is worse when you have a lot on your mind. God was watching out for me that day because a woman I work with was on the exact same flight and she let me cry on her shoulder for the entire four-hour flight. When I landed in Cleveland, I saw my mom at the baggage carousel waiting for me and I ran into her arms and wept.
When we got to the car, my dad was waiting for us and all of a sudden all of my tears of sadness turned to anger. Why did this happen to Anthony? Have we done something wrong? Are we being punished? Then I began to think of him growing up and I started to yell: “I don’t want people to make fun of him!” Will he ever look 'normal' (which I’ve learned is just a fallacy in your head)? By the time the day was over, I was exhausted. It felt like I had been up for days and I decided to give up and get some sleep.
The next day I received a call from Dr. Moore after she had spoken with Dr. Bohman and I discussed the amnio-debate with her. She said that if we wanted one that she could do it for us, but she felt that the risk of the procedure was greater than the chance of Anthony being born with any other special need. Joe and I decided against it and put things in God’s hands. The blood work showed that we had a one in 22,000 chance of Anthony having Down Syndrome.
The next few months were hard. As family members and friends found out about Anthony we were hit with the same advice: “Oh, they can fix that,” or “it could be a lot worse.” What did that mean? Is this that simple? NO. This is when I got the angriest. To me, this seemed insensitive and it was the WORST thing anyone could say to us. What about the feeding? What about his weight gain? What about going through a series of surgeries? What about healing? Ridicule? Acceptance?
I hung on to the advice that my mother gave me and this is where my feelings began to turn positive and I was ready to do my own research and learn as much as I could about Anthony’s special need and what I could do to help him. Joe had shown me some of the things he had found on www.cleftadvocate.org and other related sites such as www.widesmiles.org and www.cleftline.org. At this point we were seeing Dr. Bohman every 6-8 weeks to check Anthony’s development and also meeting with Dr. Moore every month. So far, things were looking great. Anthony was developing accordingly and the doctors were confident that his cleft lip and palate were isolated.
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