To fulfill a heart

Hi everyone, as some of you may or may not know Danielle & Curtis Franks are pregnant with their third child, a baby boy, due in July. During the 20 week anatomy ultrasound in March, UVM in Burlington discovered that the left side of the baby’s of the baby's heart is not developing as expected and after having an echocardiogram they determined that he has Hypoplastic Left Heart Syndrome (HLHS), a rare congenital heart defect. As Danielle & Curtis live in the Central Vermont area they were immediately referred to Boston Children's Hospital where they have a nationally recognized neonatal cardiac care program. Tests there confirmed the baby has HLHS & Bilateral Superior Vena Cava, another rare but not quite as serious heart defect.

In basic terms, HLHS means the left side chamber of his heart is smaller than the right side when they should be even. The left side pumps oxygen-rich blood to the rest of the body, the right side pumps oxygen-poor blood from the heart to the lungs. The Bilateral SVC means that he has two main veins coming down his neck and to his heart. On its own it’s not a serious condition, but with the HLHS they may have to address the extra vein and in sorts redirect it, leading it to be eliminated in a way. Since then they have had many more ultrasounds, echocardiograms, growth check ups, further genetic testing done and will continue to be labeled as a High Risk pregnancy that needs the many extra appointments to watch how the baby is growing and how his heart is growing/performing while in her belly.

The baby will require at least one corrective heart surgery within his first week with the possibility of some smaller surgeries and 2 more main heart surgeries in the future. Danielle was advised to be in Boston for a few weeks before her delivery date to assure she is near the hospital for the birth as Boston is the only Hospital near them that can perform the heart surgery and the baby has to be put on special medicine right after birth for his heart, while being hooked up to other machines leading up to the first surgery.

 

Danielle would like to be with the baby for the several weeks after delivery and surgery to be there for his recovery and for the many things that are sure to cause bumps in the road along the way.

So that means approximately two months in Boston. Danielle's husband, mother, grandmother, and her two girls want to be there as support during this time, to make it possible for Danielle to be with the baby as much as she can during the long recovery time. Boston is a very expensive city, especially during the summer. All organizations for patient housing assistance have been exhausted. They did find a hotel that was able to accommodate them and they did give them a discount but the cost is still very high at just under $6,300 for 7 weeks.

 

As you can imagine the cost for the hotel, fuel, food, medical bills, and future medical equipment adds up. We appreciate any assistance you can give to this growing family as they navigate this health emergency.