A bump in the road

Many of you know that Kevin and I had another visit to MUSC on Thursday. We have taken some time to dig for information in order to provide insights into our latest developments with Baby Matherly and want to try to be as transparent as possible with this update, so here it goes!

First, we think we finally see some of mommy in baby with those “McGrath cheeks;” maybe he isn’t alllllllllll Daddy!! What do you all think? Also Baby Matherly will likely be here on Tuesday, May 24th, unless he has other plans and decides he would like to be here earlier. Given recent developments baby has shown us that a C section is likely the best option for him, if we want to take an aggressive approach to treatments.

This next part of our journey is difficult to write, and I know will be difficult to read, but we want to try and keep those interested up to date on information about baby. When meeting with the pediatric cardiology, palliative care and high risk OB team at MUSC they brought to our attention a new concern related to baby’s heart. Baby Matherly has what is called a restrictive atrial septal defect. Now atrial septal defects are actually good for babies who have Hypoplastic Left Heart Syndrome (HLHS) as they allow blood to flow out of one area of the heart then pass throughout the body. With a restrictive atrial septal defect there is concern that blood has been pushed back into his lungs causing permanent, irreversible lung damage. This new development alone decreases his odds of surviving the first 2 years of life to 40 to 50% (plus or minus 10% in error; for my research friends out there). With a heavy heart I share that these statistics are fairly recent with data on babies within the last 4 to 10 years. Unfortunately, this is not the only heart concern the team has identified. Baby Matherly’s right ventricle is moderately depressed, meaning it is not pumping as strongly as we hope to see in HLHS. The surgeries that babies go through restructure the heart so that this ventricle becomes the main pumping source. I think you can see why this is worrisome; a weak right ventricle means a weak pumping source for his heart. Lastly, his tricuspid valve has mild to moderate regurgitation meaning the door that stops blood flow between the right atrium and ventricle is leaking. With all of this put together, the odds do not seem to be in our favor. There is hope that correcting baby’s restrictive atrial septal defect will alleviate pressure in his lungs and increase the pumping power of his right ventricle. However, we will likely not know this until after he is born, but we are trying to hold on to hope.

As Kevin and I process this news we begin preparing for all of our options. We are making the hardest decisions of our lives and not doing so lightly or without conviction. We are also cherishing the moments we have with Baby Matherly whether they will last for hours on May 24th or a lifetime.

I know you may be asking “how can you help?” A thoughtful card in the mail, gentle hug when you see us, smile or joke to make us laugh really does go a long way. Please feel free to message me if you need our snail mail address. Additionally, contributions to our plumfund and giftcards for gas, restaurants and general spending are always welcome. I am SO VERY BEHIND on thank you notes and emails, but want to sincerely thank everyone for their wonderful shower gifts and contributions to our plumfund thus far!!! Your love and support keeps us going during times when we are feeling down. Finally I came across this quote recently and wanted to share: “Too often we underestimate the power of a touch, a smile, a kind word, a listening ear, an honest compliment, or the smallest act of caring, all of which have the potential to turn a life around.”—Leo Buscaglia (1924-1998) Author, Professor

#HLHS #restrictiveatrialseptaldefect