Jake's Story: Parent's Letter Project Hydrops fetalis, non-immune- Jake's parents

Our son was diagnosed at 20 weeks with bi-cavital hydrops with no underlying cause. It was at a routine 20 week ultrasound that we were told he would not survive. He had a severe pleural effusion, ascites, and fluid in the skin, best seen on ultrasound on his scalp area. We were referred by the perinatologist to Children's National for further workup and a second opinion. Unfortunately the doctors at Children's had to paint a similar grim picture.

We consulted with Genetics, Cardiology, and Radiology. I even had an MRI so the pediatric radiologists and neurologists could evaluate his brain. We were looking for a cause, because the cause of hydrops is not always obvious. I was tested for everything, had an amniocentesis, etc. All tests were normal. But still his fluid remained, week after week, and we were devastated to be planning for our baby's funeral. I cried myself to sleep each night.

The genetics doctor, Kenneth Rosenbaum, MD, at Children's National was wonderful. He called us at home to check on us and discuss the case with us further, as test results became available. He was our advocate for multiple departments within Children's National, and helped keep everyone in the loop as to the latest tests and developments. As for treatment options, we were not given any, because there was no known cause. So we kept on, knowing that the only time we had with our baby was in utero. We were told if he survived to term, he would live "hours to days, at best."

We were crushed. I gave up and resigned myself to the prognosis. My husband never gave up. We had numerous people praying for a miracle. There was nothing to do but wait. At approximately our 30 week ultrasound (we had them weekly to monitor him) doctors and technicians noted a decrease in the fluid. The doctors were surprised and doubtful. By 32 weeks the fluid had resolved. Again we went to Children's National for a follow up visit. We were told this was not typical. We then had to prepare for delivery, not knowing how this fluid had affected his lung development and other organs, or what would be his prognosis, and how this would affect our first child and our family.

After months of the unknown, Jake was born in August of 2006 and stayed in the NICU at our local hospital in Northern Virginia for a total of only 14 days. It was amazing. He was poked and prodded by all the specialists and found to be essentially normal as far as they could tell. Our miracle baby, Jake, is now three, almost four years old. He was walking at 12 months, and has no developmental abnormalities that have been discovered. His only sign of the past is a slightly distended abdomen, where the fluid used to be. But he is alive! He is starting to read, likes school, and fights with his brother.

We would like to share this story with any parents who want to read it. We can imagine what you are going through, and please don't give up. You are your child's only advocate, in addition to the doctors that you will bond with along the way. The support of your friends and family will be amazing, hold onto that, no matter how difficult your decisions, prognosis, and outcome. They will help you through it all. 

Sincerely,

Parents of a miracle baby

Treatment Team

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