Where There's A WILL, There's A Way
In January 2016, we found out that Megan and Justin(JAR) were having a baby! Things progressed normally and in the beginning of March we found out it was a boy! He would be named Will. Megan went for her 20 week ultrasound and received some devastating news that no parent ever wants to hear. They were told that there was an abnormality in Will's aorta, the main artery from the heart. Subsequent ultrasounds confirmed a diagnosis of critical aortic stenosis with a possibility of HLHS (hyperplastic left heart syndrome). At this point Megan's pregnancy was deemed high risk and they were referred to child cardiac specialists. After much consideration, they were referred to Boston Children's Hospital as they are the leaders in this field and would provide Will with the best chance of a successful outcome.
The doctors decided that Megan needed to be in Boston before she went into labor. So on July 10th, we went to Boston to get her set up in an apartment near the hospital. The doctors advised her to be prepared to rent for 2 months. Five days later on July 15th, Will was born by C section. Immediately a catheterization was performed on him to open up the aortic valve. He began to retain fluid and on July 18th, an emergency surgery to open his chest was performed. Bands were placed on the pulmonary arteries to reduce fluid in his lungs. This helped him immensely as the fluid began to be eliminated. The cardiologists were still concerned about the pressure in the left atrium of his heart so a second catheterization was performed on July 21st. We remain impressed with Will's strength as he is improving a little each day.
Megan and JAR are fortunate to have health insurance but they are finding out every day that there are uncovered medical expenses. Additionally, uncovered travel and living expenses are continuing to mount at a rate we were not prepared for. Meanwhile, their life in Albany continues. Reese who is 15 months old must be cared for and the usual bills such as mortgages and the like must be paid. Compounding their financial concerns, Megan's employer advised her that since this is her second pregnancy in 24 months, policy dictated that there would be no paid maternity leave. She had 2 weeks vacation only. Several of Megan's co-workers wanted to donate some personal time to her but that was denied also.
Once Will is discharged, medical expenses such as home nursing and equipment will be needed. The doctors have advised them to prepare for future trips and surgeries in Boston which will require hotel stays, increasing costs even more.
We would like to thank everyone for their support. It is during times like this that you realize the friends you have. Your help would be greatly appreciated and would truly go a long way for the Rogan Family. We couldn't do it without each and every one of you and your prayers, loving thoughts, kind words and support.
Please forward this website to your friends and family on our behalf.
The Sim and Rogan Family
Bob and I are keeping you all in our prayers. You are in a great place. BCH is the place to be. My niece have Cystic Fibrosis and they are there for checkups every 3 months. They stayed at DevonNicole house while my younger niece was there for 6 months.
Joe and I are keeping you guys in our prayers.
Praying!!! He's a fighter! ❤️