Advanced Fetal Care Center

Hearing the news
At 19 weeks, my husband and I were told the words you never want to hear when you are pregnant: "There's a problem with the baby." Our obstetrician went on to tell us that the baby had an omphalocele which is a large hernia in the abdominal wall. But unfortunately it was also tied to Trisomy 13, 18 and many other syndromes. And 50 percent of these babies have other anomalies like heart, spine and kidney defects.

After the pain of two miscarriages this was something we did not want to hear, I felt my world crash around me.

Diagnostic tests
We were immediately scheduled at Brigham and Women's Hospital's high-risk Obstetrics Group for a level 2 ultrasound. After a very long ultrasound we found out our baby boy's complete liver, stomach and some bowel were outside the body located in a sac in the umbilical cord, this was considered a large or giant omphalocele. We then had an amniocentesis and the next day were given the good news that early tests showed no chromosome abnormalities. With this news we were told we would be receiving a phone call from the Advanced Fetal Care Center at Children's Hospital Boston.

More resources and support
Meanwhile I found a wonderful website online The MOOS "Mothers of Omphalocele Babies." They were able to give me so much information and support, that when I came to Children's I was very well-versed in the different procedures that could be used to repair an omphalocele.

"Long Day at Children's"
Luanne P. Nemes, RN, MS, PNP, called the next day to set up what I have dubbed our "Long Day at Children's." She scheduled us for an MRI, Fetal Echo cardiogram, surgical consult and genetics consult. Luanne, as much as she couldn't ease my anxiety, was so sweet and understanding, it was wonderful knowing someone was coordinating everything because at that point I could not function.

With the diagnosis of an omphalocele the waiting is agonizing, you can only step forward into the unknown, trusting God, and wait as one of the most amazing hospitals in the world gathers more and more information about your baby.

I was happy because of the websites I had found all showed this method to be less traumatic on the baby. The meeting was filled with so much overwhelming information that tears can't help but come, but we knew we were in the best possible place surrounded by people who would do whatever they could to get us and our baby through this problem.

Dominic cried and cried and that is all I wanted to hear, his lungs were working great. Dr. Jennings then wrapped up his "O" and tied it with a blue ribbon!

Dominic was immediately transferred over to the Neonatal Intensive Care Unit at Children's. That very day we convinced my nurse to let me go over for a short visit. Even if I had to sneak out, I was going to see my baby! The many tubes and monitors were stressful but I knew he was being cared for by amazing nurses. The nurses were the only reason I was able to leave that hospital five days later and go home without my baby.

Many babies with an omphalocele have eating issues and get infections from the open omphalocele but at two weeks Dominic was breastfeeding like a champ and had no infections.

Heading home
Working with Dr. Jennings and the Physical Therapy Department we had a brace made to protect and keep stable Dominic's "O." The brace made me so comfortable holding him and nursing him knowing his "O" was being kept upright and not able to bend and risk kinking the hepatic veins. The brace was a turning point for us because within two days we were out of the NICU and within a week and a half we were home!

Dominic's omphalocele now has complete skin grown over and has shrunk tremendously. On June 19, 2006, we will have muscle closure done and a belly button made.

Thankful for Children's care
Children's and the Advanced Fetal Care Center were instrumental in helping us through this trial. Having met so many women in this same situation, I have seen how blessed we are to have had the Advanced Fetal Care Center. My heart goes out to those that don't have a group like this. They took care of every test we needed, they made sure we were prepared both mentally and physically. Above all they took care of not only the baby but also the parents.