For those of you just finding this blog, I wanted to give a short recap to tell our story. For those of you who already know our story, please skip to the end.
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I am a second year law student, and my husband is a nurse and working on his masters to become a nurse practitioner. We decided we would start a family this year, and soon after, I discovered was pregnant (in the middle of 1L spring finals!) However, our dreams of an easy pregnancy and a healthy baby were put to a sudden halt when a problem was discovered at our routine ultrasound appointment at 21 weeks: the fetus had a CCAM, Congenital Cystic Adenomatoid Malformation, which is a rare pulmonary anomaly. We had gone in expecting to find out if we were having a boy or a girl. Instead, we found out we might not be having a baby at all. We were told the fetus had a large mass on the right side of the chest and it was causing the heart to shift. A condition that could mean the end of the pregnancy and even pose a threat to my own health.
One week later at the follow-up ultrasound, it was discovered that fetal hydrops had already developed. The CCAM was so large and had put so much pressure on the heart that it caused this massive edema, a build up of fluid in the body tissues. Hydrops (at least involving a CCAM) is caused by pressure on the heart, leading to heart failure, and eventual fetal death. If we didn’t have immediate surgical intervention the fetus would not survive, and there would be no baby.
Our doctor referred us to the closest specialists on this condition, at a hospital one hour north of us. They took us in for immediate consultation, conducted two days of diagnostics, and administered steroid injections meant to encourage fetal lung development. They diagnosed the condition as being a Type I CCAM, there being two large dominant fluid-filled cysts and a cluster of smaller cysts. We were told we were excellent candidates for shunt placement surgery, and they estimated an 80% chance of a good outcome (i.e. the hydrops would resolve and the pregnancy could continue).
At exactly 23 weeks gestational age, I underwent surgery for shunt placement in the fetus. Two shunts were placed in the fetus, through the back, in order to drain the cysts, reduce the pressure on the heart, allow room for the development of normal lung tissue, and most importantly, to resolve the presence of hydrops. The surgery was a minimally-invasive outpatient procedure. A small incision was made in my abdomen and the shunts were placed through a large needle, which punctured my uterus and was guided by ultrasound imaging. The surgery took place on Friday, and by Wednesday’s ultrasound appointment, the fetal hydrops had resolved. We returned home and continued weekly monitoring by ultrasound of the size of the cyst and checking for a recurrence of hydrops for the remainder of the pregnancy. While in a vast majority of cases the procedure has to be repeated, on average every two to three weeks, the shunts continued to work throughout the remainder of the pregnancy, keeping the size of the CCAM down and never again causing a recurrence of hydrops. We consider ourselves extremely lucky, and even the doctors were surprised by our good fortune.
On December 7, 2007, our daughter was born prematurely at 36 weeks. She weighed 6 pounds 10 ounces, and was 18 ½ inches long, but she most importantly, she was born with mature lungs and without any difficulty breathing. This is the absolute best result we could have, and it all seemed like a far away dream only months ago. Although she will need surgery in the future to remove the cyst on her right lung, she is home with us, healthy and thriving.
We only have Cora by the grace of God and the medical treatment we received. Many prayers were said for us, and we are thankful for everyone’s love and support. Our family and friends often refer to Cora as being a miracle. We agree; we think she is pretty miraculous. But while we believe that God gave us, and Cora, the strength to endure this ordeal, we know that without the expert medical treatment we promptly received, we would not have our daughter regardless of how many prayers were said.
Although I have kept my name and my school anonymous on this blog, I’m going to shed at least some of that anonymity today. We received our medical treatment from the specialists at Cincinnati Children’s Hospital, and we owe them an infinite amount of our gratitude for giving us our daughter. Their research and expertise made it possible for her to be born. The doctors and their team not only took us in immediately, but even sacrificed their personal time to attend to us. They were sensitive and attentive to our needs, and not just to our medical concerns. For instance, a social worker we met during our initial consultation there has followed our case, and continued to check up on us to find out how we’re doing, as they understood how difficult this ordeal has been. Additionally, we were incredibly surprised at how little they charged us for their services. They knew we were underinsured when it came to outpatient diagnostics and procedures. They gave us a very generous discount on their services, and there was quite a bit they didn’t even charge us for at all. Cincinnati Children’s is a non-profit hospital and research center, and treats patients regardless of their ability to pay (and without bankrupting them!)
That is why I wanted to ask anyone who can to give a donation to Cincinnati Children’s Hospital. The donation is, of course, tax deductible, and since we are nearing the end of the year, and the holiday season, perhaps some of you are looking for a worthy cause. They are definitely our new favorite charity!
And you can even make the donation in Cora's honor:
Thank you and Happy Holidays,
Proto Attorney & Family