“Before my daughter was born I did not spend much time picturing her. Some of that was because I was still a resident physician during my pregnancy and worked pretty much up until the day I delivered. I was too busy and tired for daydreams. Some of it had to do with us not finding out the gender so baby did not have a name yet. Either way though, I did not imagine her hair, her nose, or her dimples, I made assumptions. I assumed she would have a heart that worked properly. I assumed she would nurse, cry, and breathe. If I had known to wish for these things, I would have. But I assumed.
We named her Willow. She was born on September 16th, 2012 at 1:15 just missing her daddy’s birthday by one hour. My labor had been long and painful, I will spare you the specific details. I will just say we were exhausted and had not slept in days. If I ever thought I was a tough girl, that notion flew out the window after three days of contractions and no sleep. After I delivered, my doctor immediately handed me my girl. The pain vanished and I remember thinking she had to be the most beautiful baby I had ever seen. Now I know it must be a hormonal thing, but I really believed it. Josh said I went from yelling (maybe cursing) to telling her I loved her and the whole room she was SO BEAUTIFUL. All of my medical training, and I did not see it. She was perfect.
That moment was cut short as she was taken from my arms because her skin was blue and her muscle tone was low. She was moved to the baby warmer where, over the next few minutes, she began to have more and more trouble breathing. I watched the nurses and respiratory therapist work calmly but quickly to take care of her. While my doctors were finishing up the aftermath of the delivery, Willow was whisked away to the NICU. Even after, I really was not overly concerned. I knew it was not uncommon for babies to have trouble breathing right after birth. I was pretty sure they would give her some oxygen and she would be back with me shortly. I was not prepared for what happened next.
I had chosen one of my friends and resident classmates as my doctor. After delivery she told me since they would not allow Josh in the NICU yet, she would go with Willow and keep us informed. She returned sometime thereafter and that is when I knew something was very wrong. She was visibly upset and told me Willow was being intubated because of low oxygen saturation and they think she may have Down Syndrome. I have heard people say when faced with shocking news your world stops. It is true. The room, full of doctors and nurses who were also my friends and coworkers, fell quiet as our world fell apart around us. The next few hours are blurry, but our neonatologist informed us her echocardiogram showed no large cardiac defects, but something called pulmonary hypertension. He initially tried giving her a medication to reverse this but when it did not he began talking about emergent transport to the closest pediatric hospital in Greenville, South Carolina. I asked he instead send us to Charleston where my family lives. He arranged for this.
Josh and I went to the NICU to see our baby girl before she was flown to Charleston. She was pale, swollen, and on the ventilator. She was naked and was more wires than a baby. I immediately started trying to figure out if she had Down syndrome. I could not tell. All of my medical training, and I could not tell. I am ashamed now to say I felt disconnected from her. The vision of perfection had vanished and I thought this must be one big mistake. She can’t be mine. Everyone I knew had healthy babies. Surely mine would be healthy too. I pulled out a white crocheted hat a patient of mine had made for Willow, placed it on her head, and handed her off to the medics to fly her to Charleston.
I immediately afterwards began trying to convince my OBGYN to release me from the hospital. My doctor told me if I could walk then I could leave. So against my better judgement I walked out of the hospital only hours after delivering. Josh’s family, who had driven to our house to await the arrival of the baby, drove us to Charleston. We arrived at MUSC, the hospital where I trained, and we went immediately to the pediatric cardiac ICU. When we saw her in the ICU that night, though she was still on the ventilator, she was better sedated and appeared peaceful. Josh and I had sworn if we had a girl, she would NOT wear pink. I am not a girlie girl, and my daughter would not be one either. But in the ICU bed with pink socks and hat, we both agreed she could wear whatever she wanted. In fact, she kind of looked good in pink.
She was quickly transferred to the regular NICU after the cardiologist confirmed she had no large cardiac defect. In the regular NICU I met with an attending who gave Josh and I the first glimmer of hope we had been given all day. She said pulmonary hypertension is often self-limiting and should resolve soon and she did not see the same characteristics the folks in the previous hospital did regarding her likelihood of Down Syndrome.
The next morning we came for rounds and met with her doctors (so many doctors: an attending, a fellow, several residents, and a medical student). We discussed her case and things seemed to change rapidly after that. She was not improving as they had hoped, and we started talking about ECMO, which is a treatment that uses a pump to circulate blood through an artificial lung back into the bloodstream of a very ill baby. To me, ECMO seemed like such an extreme and invasive thing but it seemed to be the only decision to make. So we signed the consent and by that night Willow had two large catheters coming out of her neck, going into a machine that does the work of her heart and her lungs, and puts the blood back into her body. Basically, ECMO does not cure pulmonary hypertension. It merely allows the body time to rest in hopes it will heal itself. They had to paralyze her for the procedure and they set her respiratory rate very low. When I saw her that evening, she was so still, her chest did not even rise and fall to breathe. I thought she was dead. I began having doubts. Had we done the right thing? Would it be better if she died than to suffer like this?
Several days after starting ECMO our attending physician changed. This new doctor called himself Jersey. True story. I mean, you really can’t make this stuff up. He looked and acted as you would imagine a physician who called himself Jersey would. Our last attending spoke in a way that was clear and direct, some might even say awkward and indifferent. But we liked it. We didn’t need a friend. We just wanted the facts. Jersey talked too much for our taste. We would get lost in all of the analogies and his casual manner was unnerving. On Thursday morning, he accidentally gave us the life-changing news that our little girl did, in fact, have Down syndrome. I had been asking every day if we had received the results of the chromosome testing yet. I was pretty much obsessed. And every day I was told the results were not back yet. That day, at the end of rounds, he said something along the lines of, ‘It probably just has something to do with her Down syndrome.’ He could tell by the look on our faces he had made a mistake and quickly said, ‘You know her Fish test came back positive for Trisomy 21, right?’ We did not.
This plunged me into a whole new level of grief. Until that moment, I had held out hope the suspicion had been wrong. That news just stole from us the last bit of hope for normalcy after this. Being in the medical field, I understood many babies are on the ventilator or even ECMO but can recover and go on to live normal lives. Down syndrome is a life-long thing. Josh found a private room the hospital had and I aired it all. What I said to Josh and God that day are probably better left in that room, but I will say I have never been as raw as I was that day. I am a Southern girl and a doctor and used to having it all together. I turned everyone away from the hospital that day including my sister who had flown all of the way from Haiti where she lived. I thought I had ruined our lives. My broken body had provided broken eggs and given us a broken baby. I thought maybe I had done something so terrible my husband and child were being punished. I thought I would never feel happy again. Would I ever laugh or smile? Nighttime was the worst. Sleep was restless and I would wake up several times throughout the night. There would be a brief moment after I awakened when I felt normal but then I would remember it all again. The nightmare would replay and grief would sweep over me once again. I wanted nothing more than to rewind to a week ago when I was blissfully ignorant to the struggles that lay before me. We were so happy back then, and life was simple.
Now to make something clear, we made an educated decision not to have testing for Down syndrome. Looking back with some perspective, I would not change that decision. Besides the fact I was 28 years old so my risk was low and the fact our insurance charged us $250 out of pocket, we also personally believe today, as we did then, all life has value no matter the IQ, physical abilities, or number of chromosomes. I write this not to engage in some sort of political debate (I am terrible at debates. You will win.) nor to encourage or discourage testing. That is a personal decision. I just say it to explain our perspective in all of this. We would not have terminated the pregnancy had we known this, however, this did not change the fact I would have never chosen it. It was not in the plans. I have always admired parents who take care of children with special needs but somewhere deep down, in a place I had shared only with my husband, I harbored a deep seeded fear of doing so myself.
For some reason, the news of her Down syndrome seemed even more personal than anything else before it. We had struggled initially with family and friends’ different understandings about what was appropriate to share and put on social media for all to see. I was deeply hurt when personal pictures and information we were just dealing with ourselves were posted. By the time I realized it had been done, it had been shared, re-posted, and could not be retrieved. Well we only had to learn that lesson once. We held the news of her Down syndrome close for some time telling only immediate family. It was painful to say the words. Down syndrome.
During the days that followed we began to collect diagnoses: Trisomy 21, Pulmonary Hypertension, ASD, PDA, Hirschprung’s Disease, Hypothyroid, failed hearing test. Each one felt like a punch in the gut. We would be reeling from one blow and as soon as we had caught our breath, we were hit with another. We were so worried she would die. Then we accepted she would die but worried she would die before Josh ever got to hold her. I remember asking the doctors with as much composure as I could muster to just tell us. If she is going to die, tell us. We’ll hold her, kiss her, and stop the torture.
In a time where I could not see past the NICU and the machines to any type of future, something began to happen. People around me started having dreams. It’s seemed a little weird, but it’s the truth. First, it was my dad. He said he saw her in a dream running the awkward run of a child just getting their bearings. I did not think much of this at the time. Then it was my best friend and kindred spirit. She dreamed of Willow as a healthy, happy baby at home, out of the hospital and away from the machines. Then it was my cousin’s wife. All around us, in a time where my vision seemed blocked, God began bringing the vision to others. Also in a time when I was unable to pray, others prayed for us. Hundreds of people all around the world were praying for us. And even when I didn’t feel it or see it, He was all around us.
As we fought and cried, something began to change. If there was any blessing in all of her struggles it was we knew with certainty we wanted her. Sometime over that first week, we fell in love. I looked at her cute little nose and her tiny little hands and knew she was mine. She was the one with me in the ER in the middle of the night on call who would kick me and remind me I was not alone. It had been her all along. She is the one we had planned for, hoped for, but had never been able to picture. This was her. We were scared about her future and about our own, but she was ours. Down syndrome soon became something we could say a little easier and something we would forget to mention when asked about her medical history. We shifted our attention to learning and fighting for her. We also began to see life could have happiness again. I distinctly remember the first time I laughed after Willow was born. Josh and I were walking outside about two weeks after she was born to get some fresh air from the sterile NICU. Josh started smirking to himself. ‘I have the best idea for a bumper sticker,’ he said. ‘What?,’ I asked. My child has more chromosomes than your honor roll student. I laughed like a marathon runner would down a bottle of Gatorade. It felt foreign, but it felt good. We made this bumper sticker immediately and have one on each of our cars now. Still makes me laugh every time I read it.
Three days before Willow was born I was having contractions that would pick up at night and calm down during the day. I was trying to distract myself from the discomfort that is a pregnancy nearing its end and the heat of South Carolina in September. I decided I wanted to walk downtown to an outdoor concert series and dragged my husband and friends with me. They all knew better than to argue with a pregnant woman. While we were watching the band play, I began to notice two gentlemen in the crowd. They both had Down syndrome and were both dancing to the music. I mean, not the normal white-boy sway, but really dancing. Eyes closed, hands up, and hips shaking. It was the kind of abandon that is rarely seen in this world, and I was drawn in. I smiled and watched as they danced and wished I was not too pregnant and uncomfortable to join them. Towards the end of the song set, as if it was routine for them, they got up on stage and joined in a choreographed dance with the band. The crowd went wild. It was almost as if God was preparing me in that moment for what was coming. I had no idea at the time I would never view a scene like this in the same way again.
After a week, Willow was weaned off of ECMO. Josh got to hold her for the first time, and we wept. Several days later, she was weaned off of the ventilator. We cheered. Because then we could hold her as much as we wanted. And we did. All day every day. They did an echocardiogram immediately after coming off of ECMO and we were told her pulmonary hypertension was improving and should eventually become a non-issue. She had three small cardiac defects that could be easily repaired later: an ASD, PDA, and coarctation. She also had a bowel issue that would require resection. The surgery would be best done later so we would do rectal washouts three or four times per day to relieve the stool she was unable to pass on her own. We were moved to the Special Care Unit for perhaps the longer, more frustrating task of teaching her to eat. All of the negative stimuli Willow had to associate with her mouth, coupled with her already low muscle tone, made it difficult for her to learn to breathe and eat at the same time. For an inpatient, Type A personality like me, this was a difficult process. In the meantime, she was being fed through an NG tube. After about three weeks of trying with little progress, we began to realize this would be a longer process than we had hoped and began making longer term plans. Our surgeon said he could not place a permanent feeding tube now as it would get in the way of the future surgery to fix her bowels. So after much debate, we were taught how to place NG tubes, and it was decided we would go home to continue working on feeding while continuing feeding through an NG tube.
Now that we had a plan, we started thinking about going home. We started discussing our pediatrician and all of our follow-up visits. On the day before we were supposed to go home, I asked when they wanted me to follow-up with cardiology. The attending doctor said we did not need to see cardiology. Not thinking at all about her pulmonary hypertension, I reminded her Willow had a PDA that would need to be checked for closure. She had forgotten. She then said we would get another echo before we left the hospital just to be sure. The next morning (the day we were supposed to be discharged) they performed an echo that showed she still had severe pulmonary hypertension. This was not good news, and we were informed the cardiologists wanted to start her on a medication for the pulmonary hypertension and monitor her for a day. They did that, and the next day we came home.
We returned home from the NICU with a long list of things we had to do every day for Willow: rectal washouts, tube feeds, medications six times per day, therapies, and doctors appointments. Our house had been cleaned and stocked by all our dear friends with craft beer for Josh and fresh fruit and vegetables for me. One friend even cleaned our toilets. I am pretty sure that is my love language, by the way. If you clean my bathroom, we are friends for life. The time that followed is another story for another day, because Willow’s story of struggle and survival did not end the day we came home. And since it took me a year and a half to write this, who knows if or when I will ever get the rest written. I have felt since Willow was born I should write her story down. I made excuses. I am too busy, which I am. I am not a good writer, also true. It is too personal, yes, it is, but so what? I do not know what is supposed to come from it. I only know I could not shake the feeling I should write and share. So here it is.
For my friends and family, thank you for loving Willow so very well and for saying the normal things like how cute she is or how much she looks like me. Thank you for staying away when we asked you to because of germs. Thank you for not staying too far away or for too long. Thank you to those who let us know you were still there months later when things were still hard. We can never thank you enough. For someone going through something similar, I guess I hope you can feel encouraged. You are not alone. For those who have come before me on this journey of special needs, thank you. Thank you for sharing your stories and for fighting battles for our children so they have opportunities now that they never did in the past. For those who are unfamiliar with this world, I hope to give you a glimpse into it. It may not be normal or flashy, but it is still oh, so beautiful. I hope you will see the beauty and value in life different than your own. I hope when faced with the opportunity you choose patience and inclusivity. Be a friend, offer a job, or invite them to your birthday party. Because this is what we want for our Willow. Maybe you will realize you are not so different.
Also, I want you to know if she was yours, you’d love her too.”
This story was written by Nancy Hart Wicker, MD. You can follow her on Instagram here. An original version of this story is from her blog here. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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