22 weeks pregnant: We had our first appointment at UCSF Friday the 30th 2011. It was our first consult with the Pediatric Surgeons, Perinatologist, Social Worker, Radiologist, a Cardiac Sonographer, and some others I am failing to remember at this moment.
We walked in thinking our son had a bilateral CDH and walked out knowing that he has a severe right sided CDH and left waiting for more answers.
Isaiah’s stomach, intestines and liver are up in his chest cavity and neither lung is forming at the moment. His heart is strong but the ventricles are small as is to be expected with his condition (The ventricles are the tubes that come off the top of the heart. One supports the body the other the lungs). At the moment there are no other anomalies that the Dr’s are worried about, so it is just the CDH. Which we are fortunate because a lot of the cases have additional anomalies that affect the overall care and survival of the baby! However, the Dr’s don’t have enough data to give us an accurate prognosis of survival with a right sided CDH in his current condition which is still considered to be severe!
At this point we are unsure of what to expect next. The Dr’s will have a meeting on Tuesday the 4th to discuss our case to see if Isaiah is a candidate for the tracheal occlusion procedure in utero. Fetuses on the most severe end of the spectrum with liver up and LHR (lung to head ratio) less than 1.0 (Isaiah is at .5) are candidates for prenatal intervention.
While in the uterus, the fetal lung constantly makes fluid that escapes through its mouth and into the amniotic fluid. When the trachea is blocked, this fluid stays in the lungs. As it builds up, the lung fluid expands the lungs, stimulates their growth, and pushes the abdominal contents (liver, intestine) out of the chest and into the abdomen. The goal of this treatment is to have a baby born with lungs that are big enough that the child can breathe and provide itself enough oxygen to breathe on his own.
So we are praying that Isaiah made a convincing enough story that the Dr’s believe he is a candidate for this procedure. If he isn’t, then our next step is to go continue with a “normal” pregnancy and pray that we go full term. We will deliver in San Francisco, so most likely we will have to go there a couple weeks before my due date. Then, it’s a whole other ball park. We are praying that Isaiah is a candidate for the tracheal occlusion. And being that he doesn’t have any other anomalies, it looks good. Plus they took me off the Lovenox shots, which was a check mark against us.
We do have to go back on the 17th of October when we are 24 weeks to get additional measurements of Isaiah’s lungs and further testing. Because the tracheal occlusion procedure was designed for LCDH (left sided) there aren’t many case studies that the Dr’s can compare our case to. However, all of the case studies have been done at 24 weeks.
So for now, we wait to see what our plan of action is. We walked away knowing a little more than what we did walking in. Plus we go to take a tour of the NICU. To see all of those little babies really put a new light on everything.
We remain as positive as we can be and continue to pray for a miracle! We know that whatever happens; it is God’s will!
Thank you all for being so supportive and remain to keep us in your prayers!
