By Maureen Simoncini
When I was 18 weeks pregnant my husband, Kenny, and I went in for a routine ultrasound. We were excited to find out if I was carrying a boy or a girl, but we found out much more than that. The ultrasound revealed that I was having a boy, but he would be born with a serious medical condition called an omphalocele. (It’s a birth defect where the baby’s intestine or other organs stick out of the belly button. In many cases only a thin layer of tissue covers the intestines.)
Once it was established that our baby had an omphalocele, we were transferred to a doctor at our local hospital who specialized in high-risk pregnancies. It soon became clear that our case was severe—on more than one occasion we were told that our baby’s chances of survival were minimal at best.
But no matter how grim the news, Kenny and I said we were going to have the baby no matter what, termination simply wasn’t an option. It was then that I began looking for a second opinion, which led us to Boston Children’s Hospital.
In Boston we meet the wonderful Dr. Terry Buchmiller. Dr. Buchmiller didn’t pull any punches—she told us flat out that our son’s first year of life would be difficult, but she also told us that he’d eventually be OK. OK was not a term we had heard up until then and those two letters sang like music to our ears!
Four months later I checked into Brigham & Women’s Hospital, and shortly thereafter our son, Brody, was delivered.
We were ecstatic to meet our son, but our time together was short. Brody needed to be transferred to Boston Children’s right away so the doctors there could begin his treatment. Like many babies born with an omphalocele, Brody had several other medical concerns that needed treatment, some of them far more serious than the omphalocele itself.
For the next seven and a half months Boston Children’s was our home while an entire medical team looked after Brody, correcting his birth defects one at a time, waiting until he was healthy enough to have his omphalocele fixed.
At 4 weeks old he had a stent placed in his heart, which was struggling to provide his body with proper blood flow. A month later he underwent open-heart surgery to repair an atrial septal defect (ASD), which can lead to lower-than-normal oxygen levels in the blood supplied to the brain, organs and tissues.
A month after that, Brody had a tracheostomy to improve his breathing. (His lungs were underdeveloped because of the omphalocele and by 3 months old his breathing had gotten so poor that a tracheostomy was his best option.)
By 4 months Brody had undergone more medical procedures than most people will face their entire lives, but he wasn’t in the clear yet. It wasn’t long before his omphalocele started acting up. His hepatic vein, the vein that drains de-oxygenated blood from the liver, was being compressed, causing his omphalocele to swell. They tried to alleviate the swelling with surgery, but it was too difficult. It was then that the doctors decided it was time to close his omphalocele once and for all. Though doctors had said they originally wanted to wait until Brody had grown a little bigger and stronger before attempting the surgery, it was clear that waiting was no longer a safe option.
First Brody needed to be placed in a coma while a special man-made material was stitched into place over his exposed organs. Over time those organs were gradually pushed back into the abdomen. For three long weeks we had to sit and hope everything went according to plan.
It was an excruciating wait, but it was worth it. Twenty-one days after having his coma induced Brody woke up to a fully healed omphalocele! He spent a few more weeks healing and having a medication regimen worked out, but 233 days after Brody was born, our family was finally together, at home, all under one roof.
Brody’s just had his first birthday, a milestone we sometimes wondered if he’d ever see. He’s thrived so much in the past few months it’s almost like he’s a different person. I think being home with his older brother, Jameson, has done wonders for his recovery. There is so much love between those two boys, I can’t help but think it has really helped Brody’s healing.
When Kenny, Jameson and I helped Brody blow out his first birthday candle we didn’t even need to make a wish, because so many of our wishes have already come true—all thanks to the great people over at Boston Children’s.