In February of 2015, at 12 weeks pregnant and just days before our wedding, my husband and I received the news that our unborn child had a cystic hygroma.
We were completely clueless as to what this condition was. We were directed to a specialist, but in the meantime, we began to gather information on our own. We quickly realized that there was not a lot of medical information available, and what there was, wasn't positive.
A cystic hygroma is basically fluid that builds up due a blockage of the lymphatic system. We learned that the hygroma is usually a marker for other, more serious genetic conditions. Our baby's hygroma was big and we were told that our chances were very slim that I would carry a healthy baby to term. But what was even more devastating was that nothing could be done.
If fetal hydrops (excess fluid in the baby's body) developed, chances for a successful pregnancy became even lower.
On March 10th, during a specialist appointment, we were told that hydrops were present in the chest and stomach. Instructions were given to start preparing ourselves for the worst.
On March 27th, we heard the words no parent should hear... "I'm sorry, but there is no heartbeat."
Our sweet angel girl was delivered on March 28, 2015.
As painful as losing her was and still is, it was also extremely hard trying to gather information but coming up empty handed. My husband and I hope that with further research, other parents who are faced with this diagnosis will be able to find more detailed information and possible treatment options.
The Division of Maternal-Fetal Medicine at Johns Hopkins is devoted to advancing care to high-risk pregnancies through on-going research and discovery.
I am honored to run this race in honor of our daughter. And in honor of those future families who will benefit from advanced research.