“He had the most beautiful nose and chubby, kissable cheeks. He was PERFECT and ALIVE!”
Gerard Myers, Trisomy 13, 1/28/2015 to 1/31/2015, Altamont, KS
My husband and I were thrilled to discover the news that I was pregnant with our second child. At the time, our first child was only 10 months old. Many thought we were crazy, but we’d always wanted our children to be close in age.
After what seemed like a very normal, nothing out of the ordinary, first and partial 2nd trimester it was finally time for our 20 week ultrasound. We’d been through this before and knew how it would work. They would measure the baby, check development of organs and of course, what we were most excited about… BOY or GIRL?? Unfortunately that’s not how the ultrasound went. A few anomalies were detected, and the most concerning was our baby’s heart and stomach. The third and fourth chamber of the heart could not be identified and it looked as if he/she had an omphalocele (an opening in the abdomen that causes the organs to gather outside the stomach, but covered by a membrane). This is nothing that could be treated at our local hospital, so we were referred to a children’s hospital, three hours away. Of course we were in shock and even in denial. We prayed and prayed and held on to hope that because our ultrasound was only 2D, that perhaps at our referral appointment with a 3D/4D ultrasound, we’d receive news that the hospital was wrong; that our baby was completely healthy.
After the longest week and a half wait of our lives, and a million prayers later it was finally time for our appointment. We met with a few doctors, a geneticist, nurses, counselors, and had a 3D/4D ultrasound to scan for the anomalies and then an echocardiograph to look closer at the baby’s heart. Despite our hopefulness, unfortunately, yet again, we were stunned with more bad news. In fact it appeared even worse than we thought. As someone who literally knew nothing about heart defects, I assumed maybe it was just a hole that could be repaired, or something fairly simple (not that any issues with the heart are simple). It wasn’t simple. Our child had severe hyploplastic left heart syndrome (HLHS), meaning the left side of his heart was extremely small, almost non-existent. It was explained to us that is one of the most severe and complicated heart diseases that is known. Our baby’s heart could never be “fixed” essentially, as the body wasn’t capable of just growing the other half. The doctors discussed a few options with us. One option was to abort our child. We quickly bypassed that conversation. No one was going to abort our precious child; a child and gift from God, regardless of the medical anomalies. And the remaining options did not gusrantee survival of our baby either. Not to mention the additional complications the omphalocele would add.
Needless to say at the end of our day long appointment, we were in complete and utter shock. Our minds and bodies were absolutely stunned; it felt like the earth was literally crumbling at our feet. How could this happen to us? To our child? We were two healthy adults, with one already healthy child whom had been the poster child for a perfect pregnancy, labor and delivery less than a year prior. Now we are being told our unborn child has major, life threatening defects, not just one, but a few. With the news of all of this, the doctor suggested we run some additional tests to see of there was a chromosomal issue. Many times, when babies have multiple anomalies, it could be caused by a chromosome issue. Like I said, we were in complete shock and couldn’t bare the thought of any more tests or bad news in one day. So, we decided to hold off. We needed time to digest what we had just discovered. And besides, how could we POSSIBLY receive any worse news? So we thought….
Fast forward a few weeks, we decided to have a Harmony 21 blood test done. This is a non-invasive blood test performed to screen for Trisomy 13 and 18. We figured if the test results were positive, it would at least help us to better be prepared for the journey that lie ahead. After another extremely long wait, the results came back. Our baby screened positive for Trisomy 13. I can’t even begin to explain the sinking feeling that overwhelmed our hearts. I didn’t even know what Trisomy 13 meant. I just knew it couldn’t be possible for our child, so I hadn’t even researched it. Now looking back, I think it was more because I was too scared to. On somewhat of a positive note, we were able to discover our baby’s gender… we were having a boy. At that moment, finally, he had a name, Gerard.
I went home to do my research. I continued to read the same things over and over, “incompatible with life,” “1 in 10,000 births,” “physical abnormalities,” “severe intellectual disabilities”… the list went on and on. And again, the world began to crumble beneath me.
After receiving this news, monthly visits were scheduled at the children’s hospital. We continued to meet with the same doctors, and had routine ultrasounds and echos to evaluate our son’s development. With time we grasped a better understanding of what Trisomy 13 meant and what the road ahead had in store. We were very blessed to have supportive doctors along the way. They never sugar coated things for us, as we asked, but they were also very caring and supportive. Never once did our medical team make us feel as if our son’s life was not valuable. But I must say, we gave them a run for their money. We did our research. We connected with support groups and with SOFT. I wasn’t going down without a fight. I wanted to know every possible option we had for our son.
With time, the more information and research we gathered, the more confusing decisions became. As a parent, of course we wanted our son to have life, but also in no means did we want him to suffer. What parent wants that? I wish I could say that there is some magical equation or book that could give you all the answers you need. But there isn’t. With support and prayer, we slowly figured out that every child with trisomy is unique. All have different complications and struggles specific to them. No child’s or family’s journey is exactly the same, which makes each one that more special. With that understanding we let Gerard and God drive our path. They were in control, and we would be prepared and educated whichever way they lead us.
We discovered early on that every day with Gerard was truly a blessing. His issues lead to a very high chance of miscarriage or stillbirth. Knowing this we took advantage of all the time we had with him. We included baby Gerard in everything we did as a family, even though he was still in my womb. In the fall, we took our boys to their first pumpkin patch. On Halloween we dressed them both up. Our oldest son was a golfer, and Gerard was a pumpkin (I wore an orange pumpkin shirt). We took family photos and sent out Christmas cards, including Gerard in the signature. We gave him a stocking and presents under the tree. We went to Mass every Sunday as a family, all four of us. We read bedtime stories to the boys each night, and encouraged big bother to “love” on Gerard. He acknowledged his baby brother, and that Gerard was in mommy’s tummy.
Each day that passed was a milestone, one more day we had with our son. However, we still lived in fear of what lied ahead. Would we get to meet our son alive? How long would we have with him? At 38 weeks pregnant, our family relocated to be closer to the hospital for whenever Gerard decided to make his debut. Luckily, we had family that lived nearby that we stayed with, and my husband’s work was very accommodating in giving him that time off.
At 39 weeks and 2 days, Gerard was on his way. A birth plan had been discussed with our doctors, both in preparation if he was born alive or born still. A vaginal delivery was the initial plan, but an emergency C-Section was agreed, if at any time our son showed signs of distress. This is something we had prayed for, for so many months. That Gerard would have an uncomplicated labor and delivery. God heard and answered our prayers. He labored like a champ, and his heart remained stable throughout. Our beautiful son, Gerard Adam, was born, January 28, 2015 and was 6 pounds 6 ounces; 19.5 inches long (much bigger than the doctors had expected). He was beautiful. He had six fingers on each hand and six toes on each foot. He had swirls of light brown hair and matching birthmarks like his big brother. He had the most beautiful nose and chubby, kissable cheeks. He was PERFECT and ALIVE!
Due to the severity of Gerard’s heart, we were given the expectation to have minutes perhaps hours with our son. I don’t want to discredit the doctors, as they were making that prediction off of past experiences and what they knew. I want to give full credit to the glory of God, an answered miracle, and the strength of our amazing son. Gerard lived just a few hours shy of 4 days.
In those four amazing days with our son, we continued to witness miracles unfold before our eyes. Shortly after he was born, our son had the opportunity to receive the sacrament of baptism, surrounded by his parents, big brother, grandparents and aunts and uncle. As a family of faith, that was such an amazing experience for us to share together. Gerard was able to be breastfed, which completely surprised many. We were told that due to his trisomy, Gerard may have complications sucking and may not even have the sensors to prompt him he was hungry. Through God’s grace, a mother’s intuition, and the help of a lactation consultant, I was able to nurse my son, while dad was able to feed him a few bottles. It’s such a beautiful memory. Our days with Gerard were full of so much love and joy. He was constantly held, snuggled, and kissed by so many that loved him.
The doctor’s were even surprised by Gerard’s progress. Conversation started to take place about getting to take our son home. This was never in our plan. Of course it’s something we had always dreamed and hoped for, but never did we think it could actually happen. However, God called our son to his heavenly home late in the evening on January 31, 2015. Gerard passed peacefully in his mother and father’s arms.
For those of you reading this, whom perhaps are just beginning this trisomy journey, my deepest sympathies are with you. I’m sure you are reading these stories looking for that happy ending, something to give you hope, just as we did. I’m sorry, our story does not give that happy ending you so desire. However, I will tell you it is a beautiful story; at least I think so. It’s our story. No, the journey was by no means easy, and it wasn’t always beautiful. There is nothing beautiful about planning a funeral and burying a child. No parent should ever have to experience that. There are days that are so difficult, days I miss him so dearly; however our memories we created were so beautiful, and that’s what we have to cherish and hold on to. Those memories, that opportunity of holding and meeting our son made all the pain and struggles worth it. Although Gerard’s life on earth was short lived, he blessed us with many gifts that we probably would never have gained on our own. He helped us to find deeper strength, love, faith, and compassion within ourselves. Those gifts are what helped us through our journey and continue to do so each and every day. We find peace and comfort in knowing our son is in Heaven, and that we will be reunited with him again some day. It may sound cliché, but it’s the honest truth.
Our family will continue to pray for all families, whatever step they be on in this trisomy journey, in honor of our beautiful miracle, blessing, and perfect son, Gerard.
God chose us to be Gerard’s parents, just as you were chosen for your special little one. We may not understand the reasoning behind it today, or any day as long as we live on this earth, but one day we will. God bless you and the journey that lies ahead.