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Heartbreak, Healing and Hope After Losing My Baby With Down Syndrome

When we hear the phrase “defying the odds” we expect inspirational stories about finding strength in the face of adversity to follow. Unfortunately, for myself and countless others, this is not always the case. Sometimes the odds are in your favor — and yet you find yourself in a ditch on the side of a road you never meant to travel.

In 2019, our family’s strength was tested in every imaginable way. On Jan. 3 my husband, Jordan, received a devastating call; his Papa had been found deceased, in his home while his wife was in the hospital. He was the first of our grandparents to pass away.

The next few days were a blur. Two days later, and a 12-hour drive with five kids, we found ourselves in Iowa to attend the funeral. While on our trip I celebrated my 30th birthday, a milestone I didn’t quite feel ready for. After we returned home the tension remained high. Nobody was getting along – and intimacy became all but nonexistent.

In February, as things were just starting to normalize, I realized that my period was a day late (back story for context:  after our twins were born, and I almost died – twice — I had an IUD placed). Given my remarkable fertility, and the fact that our oldest son was conceived while taking birth control appropriately, I had relatively low confidence in my IUD. Despite not having many recent romantic encounters, I decided to take a test.

Two pink lines showed up right away.

I was in shock. The timing was terrible. I wasn’t really afraid of having another baby — we were seasoned professionals by this point — but I was worried about what our family would think. My IUD was supposed to have a 0.1% failure rate within the first year of placement…and yet here we were.

I had some bleeding soon after my positive test, and I assumed that I was miscarrying. A week later the bleeding stopped, so I took another test. It was darker than my previous test. I found out that my body had been expelling the IUD to make room for our baby. An ultrasound confirmed a heartbeat – I was definitely pregnant.

The next few weeks were relatively uneventful. My first OB visit went well; the office was happy to have me back and my blood work looked great. Despite these affirmations I could not shake the feeling that something was not quite right. I pushed my feelings aside and attributed them to the stressful circumstances of our conception. We had an elective ultrasound at 13 weeks which revealed that we were expecting another (our 5th) little boy. We decided to name him Calan Michael Tucker.

Our anatomy scan was scheduled for 21 weeks. Since this was not our first rodeo, my husband stayed at home and I took our 5-year-old son instead. I expected everything to go smoothly and to proceed with baby-planning as we had every time before. I couldn’t have been more wrong.

The ultrasound tech seemed nervous and kept shifting views. After about 20 minutes of strange behavior, I was taken to an exam room to wait for my OB. It felt like I was waiting for an eternity. When my OB came in his demeanor was atypical. He was normally warm and welcoming; this time he was somber and serious. I was then told that our son appeared to have a congenital heart defect, and that this particular defect was also a “soft marker” for Down syndrome (Trisomy 21). I was referred to a high-risk doctor and told that I would need to consult with a pediatric cardiologist.

I felt like I had been hit by a truck. When I got home my husband was eagerly awaiting an update and pictures. Instead I burst into tears. After I finally explained what I had learned he started crying as well. We started calling around to find a high-risk provider that could fit us into their schedule in a timely manner (I am a nurse, so I needed information and diagnostics ASAP for my own peace of mind). We finally found a practice that had everything we wanted, so we booked our appointments and waited.

While we were waiting for our appointment, the results from my latest bloodwork came in. My husband answered the call because I simply couldn’t. I had been in denial up until that point – I was “young,” healthy, and neither of us had a family history of genetic problems. My chances of carrying a baby with T21 was 1 in 940. Despite the odds, my test showed that Calan had a 56% chance of having Down syndrome. My OB explained that this number, combined with the results of my ultrasound, really put our chances of him not being affected at <1%.

At the MFM (maternal-fetal medicine) appointment my level II ultrasound confirmed the heart defect. The genetic counselor echoed the diagnostic probability that my OB had told us. I had an amniocentesis – which was less that pleasant – that would confirm with 100% certainty whether our son had a chromosomal abnormality. We scheduled an appointment with the cardiologist for a fetal echocardiogram, then we went home to wait for our amnio results to come back.

I remember the day that our results came in. I was working in the emergency department when our genetic counselor emailed me (he is a fantastic person, both personally and professionally, and I feel blessed that our paths crossed, despite the circumstances). I wanted to read the results with my husband, so he emailed me copy that we could open together. When I got home that night we sat down on the couch together, said a little prayer, and reviewed it together.

Our son officially had a diagnosis of Down syndrome.

Our love for him never wavered, but the reality of what his future would look like changed dramatically. At our cardiology appointment we learned that he had a complete AVSD (atrioventricular septal defect): there was a hole in the septum of his heart extending from his atria to his ventricles. This hole would allow oxygenated and deoxygenated blood to mix, forcing his lungs and heart to work much harder after birth. He would be facing open heart surgery at 4-6 months of age.

We were devastated, but we were not giving up on Calan! We made plans according to our newly acquired knowledge, and we prepared in every way we could. He was monitored closely, as they expected him to be smaller and weaker than a ‘”healthy” baby would be. Every scan showed the opposite — he seemed to be thriving and growing beautifully.

We kept our pregnancy hidden until the third trimester because we knew our family had negative opinions about the size of our family (even though Calan was anything but planned), and we had enough on our plates without feeling judged. When we told family that we had news, their reactions confirmed why we had chosen to stay silent. Either way, this was our path and there was no going back.

At exactly 33 weeks, everything changed.

It was a seemingly normal Saturday morning. Our older boys were with their grandparents and the twins were still sleeping. My husband was downstairs making waffles for breakfast, so I indulged my third-trimester exhaustion and slept in a little. I woke up and immediately I knew something was wrong. Calan was usually very active in the morning, but this morning he was not. That was not what bothered me. I suddenly felt like my soul had been emptied – I could not feel his energy (I know it sounds silly, but my heart just knew).

I told my husband, and he agreed that I needed to be checked out, but I took my time getting ready to go to the hospital. He remained cautiously optimistic, and I did not want to destroy his optimism prematurely.

At the hospital the nurse tried to reassure us that everything was probably fine. After failing to find his heartbeat with the monitor, the on-call OB came in with the portable ultrasound machine. I could tell that Jordan was starting to feel anxious. I didn’t want to watch as she turned on the screen, but for some reason I couldn’t look away.

I remember looking at his perfect little profile first. Then I saw his chest – perfectly still, not even a hint of a heartbeat. We both broke down. We hugged and ugly-cried, all while the hearing the gallop of other heartbeats echoing down the hall.

Soon we were moved to a private room. The OB returned to discuss our birth plan. Calan was breech, tucked right under my heart, so a C-section was brought up immediately. I flat-out refused. In retrospect I can see how that moment transformed me into the woman I am today. I knew that I needed to give him the same kind of birth that his four brothers and sister had. I was going to do right by him. I became his advocate.

The next 24 hours felt like a decade. I obsessively searched for explanations to questions that will never be answered. Twenty-four  thousand babies are stillborn annually in the United States, according to the Centers for Disease Control and Prevention, but only about 1% of pregnancies end with this heartache. Here we were, once again, defying the odds. I wish I had known then what I know now; there are so many things that I would do differently. Meanwhile I listened to the cries of newborns the seemed to pierce my heart at random intervals.

I had been blessed with relatively easy deliveries in the past, but delivering Calan was the hardest thing I have ever done. On Sept. 1, 2019, at 6:11 p.m., I gave birth to our beautiful, silent son. My husband cut his cord just like he had done five times before. We measured him, diapered him, and held him. We memorized every one of his features and we introduced him to his siblings and grandparents. He was with us until after midnight, at which point we were so exhausted that we finally agreed to try sleeping.

The next morning we went home, broken and empty. We planned a funeral for our little boy instead of looking forward to baby snuggles, giggles and milestones. We kept going, one task at a time, even when we wanted to disappear into thin air. It took everything in me to show up for his memorial. I didn’t want to acknowledge, once again, that he was gone forever.

One week after he was born we said goodbye for the last time.

I immediately went to work building a legacy for Calan. Always a pragmatist, I started by meeting with the manager of L&D with a list of practical, meaningful changes that could be made to their perinatal bereavement program. I scoured every piece of research regarding stillbirth, pregnancy and infant loss, and I reviewed every informational and support site I could find. I started pulling together resources to help other families because that was something I had the power to do.

Everyone knows that pregnancy and infant loss sometimes occur, but nobody thinks their family will become a statistic. I certainly didn’t. When I stumbled upon the online loss community I suddenly realized the truth — I had not been cursed, I had just been incredibly blessed five times over. I found my people. Despite being brought together by the worst circumstances imaginable, I was suddenly surrounded by unconditional love and support (this is something you can’t put a price tag on, especially because most of our own family had gone MIA after our loss).

For the first time in my life, I knew my true purpose. I stopped caring about the opinions of others and took ownership of my life. I found my voice. I put 100% of my energy into breaking the silence and erasing the stigma still surrounding pregnancy and infant loss. Nobody who has lost a baby has ever deserved it, and nobody should ever feel isolated or ashamed. I wish I could keep it from ever happening, but with things the way they are I have to make peace with doing what I can to support those who are forced to walk down this dark path.

I have now published well over 100 stories from other mothers and families that have lived through miscarriages, premature deliveries, stillbirth and infant loss. I acknowledge our angel babies every day, and I say their names with pride and love. I want every mother with empty arms to know that she is never alone, and that her baby mattered! She should never have to suffer quietly because she might make others uncomfortable.

I owe everything to Calan. I would not take a moment of our journey back even if I could. He was, and always will be, my son. He was not a “Down syndrome baby” — he was a beautiful boy who was dealt an unfair deck of cards. He fought for as long as he could and his life will not be forgotten. His story is ours, but our experience has been far from unique. Countless other families have walked in our shoes before.

I am so grateful for the woman I have become because of the brief time I spent with our son. After over 30 years of living with (sometimes crippling) anxiety, and trying to compensate by being a doormat, I have finally taken charge of my own life and identity. I am no longer passive. I am an advocate. I will start the conversations that nobody else wants to. I will remember my son and all the other babies taken too soon. His legacy, and my journey, will be forever intertwined.

We really did defy the odds, in a positive way, after all. We are stronger, more resilient and motivated. If we can survive this we will survive anything that life throws our way. I am glad that 2019 is behind us, and I am so excited about what the future holds. I look forward to seeing what silver linings, and rainbows, 2020 will bring us.

If you have lived through pregnancy or infant loss, or are facing and prenatal diagnosis with a questionable outcome — I will always be here for you. It doesn’t matter if your loss was at five weeks, 40 weeks, five months or five years. Even if you just had your first abnormal ultrasound yesterday, or you said goodbye years ago, I will always be a shoulder to cry on.

Let me say your baby’s name. Let me cry with you. If you are ready, let me share your story!

Take things one day at a time.

Respect the unique timeline of your grief.

Do not compare your loss, or grief, to that of others.

Remember that your feelings are more important than the opinions of others.

And please, above all else, allow yourself to find joy again.

Parents in a hospital room with their newborn baby.

Follow this author’s journey calansheart.com.

Photo submitted by contributor.