Eight months ago we received the wonderful news that we were expecting. Our son was going to be a big brother and we were venturing into a new parenting domain. (Little did we know at the time how new of a domain we would be venturing into).
Four months ago, (16 weeks in to our pregnancy), the obgyn noticed something on an ultrasound and sent us to a specialist. We were told that our new little one's diaphragm did not form like it should have, thus allowing the stomach to move up into the chest, pushing the heart to the center of the chest. A condition called a Congenital Diaphragmatic Hernia or CDH. Hoping that it would right itself, we decided to wait two weeks before we made any decisions. In that time we learned that the Diaphragm forms between 8-10 weeks in gestation and when we returned at 18 weeks the diagnosis had not changed.
We were referred to Cincinnati's Children's Fetal Care Center (approximately 6 hours from home) and went for our first visit at 24 weeks (about 3 months ago).
We had read up quite a bit on the topic by this time, learning new terms such as ECMO, a machine used to oxygenate the blood, thus allowing fragile lungs time to grow, Pulmonary Hypertension, Echo Cartiogragm, NICU and many others. We saw many stories on the web about CDH patients and read about survival rates from 50-80%. Hospital stays also ranged from 2 months to 10 months.
Everyone at the Fetal Care Center was wonderfully supportive, we received a positive feeling from the very beginning when the doctors noticed lung tissue. We were at the Hospital from 8 a.m. to 5 p.m, we had a fetal MRI, Fetal Echo cardiogram, Ultrasound, talked to a genetics counselor and social worker. The day ended with a team meeting where they took all of the test results and told us how they thought, she was doing. We were told that overall for a CDH case she was doing very good, She has one full lung and a very compressed lung, her heart had all four chambers and was functioning as it should. Her head to lung ratio was good, but she did have her stomach, a loop of her intestine and a small tip of her liver in her chest. The doctors said that if she kept progressing positively that they did not believe she would need to be hooked to the ECMO machine and for saw a near 100% survival rate. They also mentioned that there was a chance also that her condition could decline as well and then the survival rate and need for ECMO could change.
Those of you reading this might be wondering how this happens and if it can be fixed? CDH is an un-explained, hiccup, (as we like to call it) in development. It occurs in about 1 in 2,500 births, there is nothing anyone can do to prevent it.
In-utero surgery for CDH babies is used in the worst case scenarios, In a lot of cases, like ours, the baby is born naturally, and they work to stabilize for transport to the NICU. Once the baby's condition is stable they will schedule a surgery to move the stomach and other organs to their normal positions and repair the hernia on the diaphragm. Stabilizing the baby could take hours, days, weeks or months depending on their condition at birth. The Hernia is repaired either using natural internal tissue such as stomach mussel or using a mesh or Gore-tex material.
In our case our best option to get her the best care is to relocate to Cincinnati, 2-4 weeks before our due date (April 13). CDH babies tend to arrive on the early side so they want us early. Our next appointment in Cincinnati is March 2. At that time they will let us know when they think we should relocate.
Now to present time, we are about 32 1/2 weeks. We have been to several doctors appts, all still showing the heart pushed to the center. The positives being that she is a super active girl, just like her big brother, so I know she is growing well. On the ultrasounds we have seen lots of breathing movements, which tells us that she is strengthening the lungs that are there. Her arm and leg bones are growing long and strong, so it looks like she'll be taller then dad when she grows up. Her room is almost ready for her and her brother is getting all of the baby toys ready for her to play with. It's cute he goes into his "sissies" room and plays with all of his old toys like they are brand new.
10 days and we'll be back in Cincinnati- We are staying positive through life's little hiccups! To keep our famlies and friends updated on our little hiccup I have started this blog....
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