Our journey begins...

Mar 24, 2016
3 min read

We are going to have a heart baby (that's the term I've heard others use)! During our 20 week ultrasound I asked the usual question on the top of all the What to Expect, WebMD checklists- “does everything look normal on our baby’s ultrasound?” To be honest I knew the answer to this, everything was fine! How could it not be? I followed all the rules in the handbook for “how to make a healthy baby.” Instead my heart sank as my OB said, “We need to talk… there is severe defect with your baby’s heart….I’ve had patients who survived this condition and others who have not…..(Charley Brown moment).” Thank heaven my mom was with me to ask all the questions which immediately exited my mind. Instead of hearing that everything was developing as to be expected with our little boy, we learned that baby Matherly has hypoplastic left heart syndrome. This news has rocked our world. Kevin and I have been processing what this means for our little man and for our family. What we know: he will need multiple heart surgeries (definitely 3 before the age of 5), never be a professional athlete (although we suspected this to begin with considering our statures), and because these medical procedures are so new; life expectancy and prognosis beyond 30 years of age is unknown (this one weighs the heaviest on us…). Along with this news has come a roller coaster of emotions from joy over baby hiccups to anger with why us talk to sadness and reservations about the difficult path that lies ahead to wishing for ‘typical’ first time mom worries like birth plans or regular versus cloth diapers. I have personally been frustratingly humbled to learn that following all the rules doesn’t matter sometimes. But read an article recently that put our experience into the perspective that devastating events happen in everyone’s life; often for no reason at all. And now it is our turn.

We have learned positive news though, that baby’s aorta is more developed than is typically seen in hypoplast left heart syndrome. We also met 7 of the supposed 100 members who will take care of baby Matherly after his birth at MUSC. Their concern and care of us and baby came through during the visit and will return in 3 weeks to monitor the development of baby's heart.

We have also been truly humbled by the kindness, love and support provided by our friends and family! I know I haven’t expressed my thanks to each of you personally, but I promise I say it in my head every day. So Kevin and I (with our amazing support systems including dear friends and family) are embarking on this journey together. This path is full of ambiguities, trust in professionals and hope.

You may be wondering how can you help us? Please continue to say prayers and send positive, uplifting thoughts as we continue to gather information about baby, and he makes his way into this world. Medical, travel and accomodation expenses are and will continue to mount, a link to our plumfund is available if you feel obliged to support us through our journey. Any amount of contribution is so very appreciated!

As always remember to, “Be kind; for everyone you meet is fighting a battle you know nothing about.”