“It’s positive! The stick doesn’t lie. We’re pregnant with our second baby. Yes! Oh my, they’ll be 15 months apart. That will be nuts, but hey, we can handle it. Then they will be best friends. Oh, I hope it’s another boy so they can play together. What am I saying? I just pray it’s a healthy baby.
Whew, that’s a relief—the test for geriatric moms came back okay. Jeez, science, thanks for that term of endearment even though I’m still in child-bearing years. Never mind, our baby is okay, healthy, and it’s a boy! Yes! We’re in the clear and out of the first trimester. Now to start spreading the word to extended family and friends on social media and planning the nursery.
At our next obstetrician appointment, I even had the nerve to ask about the risks with baby number three at my age, perhaps a little prematurely since I was only newly pregnant with this second child of ours. We had some tests taken at that same appointment and I totally guilted my husband into taking me to lunch before returning for the results just because I wanted to spend more time with him.
The results… ‘Wait, what? Why me? Why us? Why our baby?,’ we asked God as we got the news.
On July 19, 2017, only a few days before our second wedding anniversary, we found out at 16 weeks pregnant that our tiny unborn baby boy had a rare congenital heart disease called Hypoplastic Left Heart Syndrome (HLHS). He would only have half a heart. This defect is so dangerous that without at least three surgeries, two of them right after birth, our baby boy would die within his first week of life, if he even made it to full term. Only six institutions in the U.S. have surgeons that can operate on HLHS infants.
This had to be some mistake. The doctor handed me a box of tissues; I wasn’t really sure why yet. HLHS – what is that? I’d never heard of it. We were immediately sent to the high-risk obstetrician for another ultrasound to confirm the results. Once it set in that there was no mistake and that this was in fact the truth and what this would mean to our unborn baby, I started to hyperventilate on the table where they had just taken the ultrasound in that tiny dark room. I wanted to throw up.
Our obstetrician proceeded to tell us we should consider our options since such a dangerous and rare condition would send our family and marriage on a treacherous roller coaster of emotions and could very well end in infant mortality at any point.
We tossed. We turned. Against the advice of the doctor I devoured all of the information I could find on the internet only to be left in total emotional annihilation, leaving my husband to pick up the pieces. I wept aloud—the kind of wailing that creates the ugliest of ugly cries. My husband would weep alone in the shower over the devastation we both were enduring. We didn’t sleep. I didn’t want to eat. We wanted someone to tell us what to do. I wanted to know the outcome of both scenarios for this baby and to look into his future to choose the better outcome for him and for our family. We confided in the family, friends and clergy about this war within of ‘how can we be the best parents to this child.’ Do we put a tiny baby through torture and rip his body apart over and over to try and ‘fix’ him enough to live? What kind of life could he live? What would be his quality of life? Could he marry? Could he have kids? Would he live in depression knowing that he had HLHS? Would we be going against God?
After much soul searching, my husband and I needed to make a choice. The 20-week mark of termination allowance was approaching. If we kept waiting, the decision would be made for us by law. We were so confused and feeling trapped since both ways felt right and wrong at the same time.
Finally, using our wedding-ring fingers in a ‘pinky promise,’ we made a pact and promised that we would move forward with the pregnancy and never look back, come what may. We decided that he was God’s baby, not ours. We knew that if we did terminate his life, he would not be in any more pain, but we also knew the outcome would be death and didn’t know if we could live with that choice. Moving forward, however, would allow God to be God and work HIS plan through this baby, to bless people that this child encountered whether that be for just part of a pregnancy that ended in miscarriage, a few days of life, a few years, or many. Yet isn’t that uncertainty truly what we all have? We really don’t know if any of us will live a few more hours, days, or years.
I told the doctors that as a person already suffering from diagnosed OCD, I needed an amped-up dose of my medicine back in the mix so I could cope through this dark time of unknown, fear, and depression and continue my mission of the pregnancy for the sake of our child. They confirmed that it couldn’t hurt the baby any more than HLHS already had and agreed that the best outcome for our baby would occur if I could complete a full-term pregnancy with a healthy mental state and produce a large enough baby to handle the immediate surgeries he would encounter following his birth.
Months of dark worry passed. We would pray that God’s will be done and not our own, even though there were many times, I’m sad to say, that I half hoped God would bless me with a miscarriage to take this cup and let it pass from me. But our pregnancy progressed and the baby kept growing. Soon Christmas was approaching, as was day of the scheduled induction and thus my ‘light at the end of the tunnel.’ I was so nervous on so many levels. Birthing a baby is already enough. Adding the extra pressure of this abnormal situation was elevating our blood pressures by the minute.
Push! Oh yes, I remember this from 15 months ago. I pushed and pushed and pushed—and he was here! I produced our gorgeous 9-pound, 2-ounce baby. Now it’s up to the team of doctors and nurses to try to help him live. I was allowed to hold our baby boy on my chest for 5 minutes; any longer might endanger his life. Then a team of 10 doctors whisked him away to the cardiac world of the adjoining children’s hospital.
Thus began the ‘outward’ and more visible part of this journey of setting aside ourselves in every possible way—being unable to hold our baby as he had to be put in sub-atmospheric breathing like a ‘bubble boy’ prior to his first surgery; my husband clocking six miles a day on foot checking on both the baby and me since we were in separate but adjoining hospitals; crying at the dinner table all through Christmas Eve family dinner because I was so worried about leaving my newborn baby all alone in the hospital, while swallowing food I couldn’t even taste over my tears; openly pumping milk for our newborn many times a day in the back of the glass-walled ICU room while nurses and doctors streamed through asking questions and updating us on the current status of our newborn; spending hours on the phone with Social Security and TennCare fighting for coverage so our special needs baby would not be overlooked and would have some healthcare coverage as we accrued over $2 million dollars in medical bills; being thankful and amazed at the generosity of strangers who would reach out and support us financially and/ or emotionally; disappointed when our friends would distance themselves because they didn’t know how to handle supporting us, though all we needed was a simple text or phone call from time to time to say they were thinking of us; appreciating family as our first-string emotional cheerleaders; having long-term leave from work; draining our savings to enable me to be by our baby’s side in the hospital; having the Nana-support for my first born baby boy who wondered where mommy went for hours every day to see about his sick brother; enduring over 80 days, 150 round trips to the hospital, 3,500 miles in travel. Every day, every day.
Every day we make a conscious decision to move forward, trusting in God and collaborating with our team at Vanderbilt Children’s Hospital in Nashville, Tennessee, promising to live our lives only hour by hour until we feel like we can take day by day, then week by week. Not making plans for the next month or for summer like most families, but truly living for the moment and taking in each joy of life as it comes. Allowing ourselves to be blessed by everything from the first cry of life after birth; getting to know the staff in the PCICU at Vanderbilt Children’s Hospital and their passion for care of our sweet baby; rejoicing when he could have great bottle feeds and not allowing ourselves to stay down during the infection that would cause his temperature to reach dangerous levels, making our baby scream and be inconsolable for 7-hour stretches as we would try to pet his little head and sing to comfort him; irregular heartbeats reaching the 300’s; gallstones; two heart ablations; a cath procedure; two open-heart surgeries; months of hospital stay; his piercing but silent cries of excruciating pain, silent because his vocal chords had been tormented by his breathing tube apparatus.
Ours is one of many babies fighting heart disease to be here on earth. He didn’t choose to be this way. Nor did we choose this for him. My husband would occasionally have to stop me from spiraling into self-doubt, wondering if I had done something wrong that has caused this situation. There will be many more trials our baby and family will face. As anyone dealing with a rare congenital heart disease knows, it is a life-long journey since there is currently no known cause or cure for CHD or HLHS. It is now May of 2018, and our four-month-old infant is currently recovering from his second open-heart surgery in the PCICU for what could be days or months. He continues to be a daily testament to our hearts with every breath he takes, every smile he gives, every new giggle he discovers.
His name is Luke, which means ‘light.’ Luke was a great physician in the Bible. On every one of our trips to our high-risk obstetrician we read a billboard on the side of St. Thomas Hospital in Nashville: ‘With God, nothing shall be impossible.’ Luke 1:37. We got the message. Thus at 37 years old, only days before Christmas, I birthed our baby named Luke Thomas.
He is our light through the doubt. Truly an angel on earth among us. A living sermon. A miracle.
We now must allow God to use Luke’s life according to His plan. Luke Thomas is truly our perfect gift. We have made the commitment to each other, our family and our son that we will try to raise him with the knowledge and respect of his disease for his safety, but will not let it be the daily focus of his life. HLHS is only a part of him, not the whole.
Why me? Why us? Why our baby? We still ask the same questions, but we ask them seeking purpose because this much suffering cannot be in vain. We no longer ask for our situation to change or be removed from us. We know we’ve been chosen and now ask that our situation change us. Let’s find a cure. God bless you. #LukeStrong❤”
This story was submitted to Love What Matters by Linda Pilkinton, 37, of Nashville, Tennessee. The family has started a 501c3 called the Bright Heart Foundation to help other babies with CHD, their families & their physicians in connection with Vanderbilt Children’s Hospital. Submit your own story here, and subscribe to our best stories in our free newsletter here.
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