Wednesday December 6th, 2023, at our 20-week anatomy scan we sat in wondrous excitement while we awaited the reveal: baby boy, or baby girl? Anticipation and angst began to grow as the ultrasound seemed to take much longer than we can recall with our first child. The apologetic tech then led us into the exam room to discuss the findings with the physician. There was never a moment in which we suspected something was wrong, nor that our lives would be forever changed in the blink of an eye. He informed us immediately that there seems to be an issue with the baby’s heart, and without further information said that we had to see a specialist. Tears started to flow, and our minds were going to the worst places. Six dreadful days were spent scared to death of what we would be told and praying that we had been misinformed.

Monday, December 13, it was confirmed through an echo with a specialist that our son Samico did in fact have a congenital heart defect. Tears flowed stronger, as did the fear of not knowing what all this meant for our son, and for our family. Words of wisdom and validation were shared by a nurse while she sat and cried with us, as her son had a similar diagnosis, and sadly did not make it.

Tuesday, December 19, in what felt like a lifetime of waiting, the pediatric cardiologist confirmed through an echo that our baby boy Samico was officially diagnosed with Hypoplastic Left Heart Syndrome (HLHS), with a restricted atrial septum. Translation: the left side of his heart is underdeveloped, and the hole in his heart that is required for blood flow is near closing. This diagnosis comes with one of the highest mortality rates for HLHS patients.

January 10, 2024, we were then sent to MUSC down in Charleston, 4.5 hours from our home in Seneca, to meet with the team of doctors for further testing and a treatment plan. During this visit the bad news continued to pile on as they were concerned that in addition to the heart defect, he may also have a lung disease known as “Nutmeg lung” due to the hole in his heart closing, causing blood to back up and scarring his lungs. If their assumption was correct, there would be no intervention; they would only be able to offer comfort care. We left this appointment scared to death that we were going to lose our baby as soon as he was born.

February 8, 2024, six long weeks had passed before heading back to MUSC in Charleston for the MRI confirming whether or not he had Nutmeg Lung. That day, God gave us a miracle as the team announced that he did not, in fact, have any lung disease. We cried tears of relief and were told to hold onto this feeling of joy that our son still has a fighting chance! Our news did not end there however. Along with having HLHS, Samico growth is restricted, making him smaller than what he should be and will require multiple checkups weekly, as it is unpredictable how this is going to affect him.

April 10th, the many teams involved with the birth of our baby boy Samico at MUSC have planned for us to check into the hospital in which the final echo before delivery will confirm if the hole in his heart is open or closed. If closed, the intervention offered to open a hole allowing blood flow comes at a substantially greater risk for mortality.

April 11th, at 8am my C-section is scheduled. We were told as soon as he is born, IF he is thriving, they will hold him up so we can take a picture, but we will not be able to feel his warmth and he will be taken away before he receives his first kiss from his loving parents. Samico will be brought to a staging room to get cleaned up while his vital signs are monitored before proceeding to the Cath Lab to receive a heart catheter, balloon, and a shunt to open and keep open the hole for blood flow. God willing, he survives his first major procedure, allowing him to gain some strength before performing his first open heart surgery. He will undergo a series of three surgeries, spanning from his first week of life to five years old. We were told to expect to be in the hospital a minimum of eight weeks to several months for each stage.

MUSC has been very honest with us about what to expect, and the hard reality of what we are going to be facing. Every child with HLHS is similar but different, and things can change at a moment’s notice. Our family is trying to maintain the highest hopes for the best possible outcome, but at this point we honestly do not know if our son will survive, and navigating our lives through this has been so challenging and heart wrenching with all the unknown.

My husband and I will be staying at the Ronald McDonald house in Charleston during this time, but our three-year-old daughter will be staying with my mother-in-law Jane, 4.5 hours away, back home in Seneca. Our heart hurts knowing she will not be here with us, one of the many sacrifices made because we know the importance of trying to keep our daughter’s life as normal as possible with her daily routine so she can continue to thrive. Jane will be driving her down to visit us and her little brother as often as possible. My husband and I are terrified and feel helpless because we cannot protect our son from this disease. It is the worst feeling in the world when you cannot protect your children from harm or illness.

We hope that no one will ever have to feel the pain our family is suffering with!

We truly need a Miracle, so we are reaching out to ask for your help and prayers to save our little heart warrior, Samico. Our initial out-of-pocket expense, AFTER insurance, there will be a minimum of $18,000+. This does not include our food, gas, travel expenses, housing cost, and to have our daughter brought here to us. Every tiny bit will help in our son’s journey, and we will be forever grateful for your generosity, prayers, and support.

Thank you for reading our story and being part of our journey in any way you possibly can.

With Love, from our family. xoxo