Abram Stirtzs' Story
(updated 5/28/08)
You’ve heard the saying “everything changes when you have a baby”; well my husband and I found this to be unbelievably true.
Our first child- Abram was due to arrive October 16th 2005 and we were excited. I had a wonderful textbook pregnancy with 2 normal ‘unremarkable’ sonograms.
October 8th our son made his way into our world. My water broke early in the morning but labor did not follow so I was given pitocin to help the process. Hours later my obstetrican decided to do a c-section for failure to progress. I will never forget the silence that followed “it’s a boy” in the operating room. Having had some medications to help keep me comfortable during surgery I struggled to make sense of what the next sentence would echo. As I looked over at the warmer I could see Abe’s long feet and legs, his face beneath the warming towels. My nurse quietly stated, “Sarah, he has a cleft lip and palate”. My heart sank as I tried to think of something to say and also how I would explain this to my husband who, at the time had no idea what this meant. My head was spinning as I thought, ‘there has to be a mistake, I must be dreaming’ but it wasn’t a dream, it felt like a nightmare. What was it the sono report said- unremarkable?
The first time I saw my son’s face was heart wrenching. I could not see past the birth defect in that moment, all I saw was an ‘imperfect’ baby that must have been my fault somehow. I also felt intense guilt that I did not give my husband a ‘perfect’ son.
Recovery room was a blur as I tried to make sense of what has just occurred. The on call pediatrician came to talk to me. There was more to Abram than just the cleft. Abram had a loud heart murmur, severe hypospadias and some other midline abnormalities. The doctor felt that there might be a syndrome involved but further testing would have to be done to confirm this. I am a Labor and Delivery Nurse and have seen many babies born, some with clefts and various other birth defects, but never did I think this would happen to my child. I couldn’t help but ask “God why me? But in the months to follow, I would learn why.
After the initial SHOCK, it came time to hold and examine the rest of Abram on the postpartum floor. I looked at him for the longest time as if he weren’t mine- there still must be some mistake. I heard a lot of “they can do great things with clefts now” but it didn’t help lessen the pain we felt because there wasn’t a fix for it RIGHT now. God was teaching me patience. My husband and I cried a lot that first day and some the next, but then it was time to stand up and accept our son and realize we had SO MUCH to be thankful for. Abram had so many other great features - his little round head, sweet little cheeks, long fingers and toes and the softest cry. His cleft also became a great place to kiss!
After 2 days at Salina Regional Hospital, Abram was transferred to Children’s Mercy to be further evaluated and seen by the various specialists. The genetics team gave him a diagnosis of Opitz-Frias syndrome and Dr Singhal (our plastic surgeon) and his team came by to talk and answer questions. I think the most helpful thing was to see all the before and after pictures of other cleft children our doctor had worked on. I so vividly remember our doctor saying, “it is going to be ok, we are going to take good care of your son”. I have so much MORE respect for the doctors and nurses who work with babies/ children- they are amazing!
Feeding was an issue with Abram in the beginning but I was able to pump and feed him via the Haberman feeder. We had several setbacks while in the NICU- but finally on day 10 we were released home. This was the first time I really realized I was a MOM and going to bring my baby home at last!
Abram’s first surgery for lip closure was at 4 months, and the palate closure was at 1 year of age. Both of the surgeries brought some ‘challenges’ post operatively but Abram really amazed us with his resilience and ability to bounce back (faster than his parents!). Abram also had 3 other surgeries (at 6mo. 13 mo. and 15 mo.) to repair his hypospadias and place ear tubes but they were easier in comparison to take care of.
Abram is now 2 ½ (2008) and a thriving little boy. The next surgery will be at age 4 and that will help reshape his nose/lip and also work more on his palate. Abram does speech therapy weekly and has an extensive sign language repertoire. (Communication is not a problem thanks to “Signing Time” Videos!)
For those of you reading this that maybe have just found out you are having a baby with a cleft or were surprised by it like we were, have hope. I know this is not what you planned for your child, but it is what God has allowed and God does not make mistakes. Your child will amaze you and teach you things you never dreamed possible. It will also forever
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