“My husband, Will, and I met in high school, and though we didn’t have an immediate attraction, it wasn’t long after graduation that we began dating, and that quickly led to engagement and wedding plans. I was in school to be an RN, but my hope and dream had always been to be a mom. We shared a vision for what our future would look like: we’d marry, settle in our little town, Will would work in his dad’s masonry business, we’d serve in our church, raise a family of however many little ones we were blessed with, and basically live happily ever after.
We married young – I was 20 and he was 19 – and we were very happy.
In time, our house began to fill up with little people. We had four little girls in a row – a crew of blue-eyed blondies, betraying their Dutch heritage – and then a son, another daughter, and another son. Our house was a busy, busy place, full of chaos and quarrels, giggles and games. And laundry. Never-ending laundry. And though the days were sometimes long and tiring, and the nights were constantly interrupted by someone in need of something, we loved it. We believe that children are a blessing from God, and we were thankful to be blessed with them.
Pregnancy was beginning to be hard on me though. Morning sickness had left me flat on my back, unable to stand up for weeks in the first half of my last pregnancy, and Will had to take time off work to care for me and the kids. We wondered what the wisest plan was for our future. We were still young, and though our house was crazy at times, we still hoped to add another child or two to our family. We wrestled with this and prayed about it. I lost weight and Will and I started running together, putting us both in the best shape we had ever been.
We decided we would try one more time, and very soon I was holding a positive pregnancy test in my hand, half elated and half terrified. But sadly, that little one couldn’t stay. I miscarried around 8 weeks, and we were heartbroken. We saw our family doctor who reassured us that this is not uncommon and that there was no reason we couldn’t try again. And sure enough, it wasn’t long before I was pregnant again. But at 10 weeks I went for an ultrasound, and the silence of the technician confirmed my worst fears. We weren’t going to get to meet this baby either. Again, heartbreak and disappointment. I sat down with our doctor and she could find no reason why this would have happened. She encouraged us to give my body time to recover, and then try again. Surely this wouldn’t happen three times in a row. But it did. Our next pregnancy also ended in an early miscarriage around 7 weeks.
Now we were seriously torn about what to do. I saw an obstetrician who didn’t offer a whole lot of advice, except to try taking a progesterone supplement if I became pregnant again. My own research didn’t give me much reason to put a lot of confidence in the benefits of supplemental progesterone. Was it right for us to try to conceive again when it seemed like my body couldn’t carry a baby, for some unknown reason?
After a lot of thinking and praying, we decided we’d try one more time, and if I miscarried again, that would be it. We would consider that door closed. And so we found ourselves expecting one more time, but no longer with the naive assumption that all would be well. I started progesterone and saw an obstetrician instead of my usual familiar midwives. We were very encouraged when we saw our baby’s heart beating at an early ultrasound. This baby was going to make it. This one was going to be okay. And, by God’s grace, I wasn’t as sick as with some of my previous pregnancies. There was some fatigue, of course, and a bit of nausea, but not the debilitating ordeal that I was afraid of. I got a fetal doppler to use at home so I could hear that beautiful heart beating myself, any time. We began to get excited.
And then one day, sitting on the edge of my bed, I had a flash pop into my mind.
This baby has Down syndrome. It wasn’t worry or paranoia. It wasn’t something that had ever occurred to me before. Older women had babies with Down Syndrome, and I wasn’t old – I was only 35. I immediately dismissed that thought and carried on. Everything was progressing well. I had my 18-week ultrasound and Will and I were delighted to see our little one kicking and rolling and growing beautifully. Baby proudly showed us that he was 100% boy, and we were thrilled. At 20 weeks I would transfer from the OB to the midwives, and we could relax a little and enjoy the final weeks of this pregnancy and await the arrival of our son.
But the obstetrician’s office called a few days later. ‘We’d like to discuss the results of the ultrasound with you.’
That had never happened before. This could not be good. What could be wrong? We saw our baby. We saw his head and eyes and mouth and arms and legs and fingers and toes. We saw his heart beating. What did we miss? What could they possibly be going to tell us?
I called my family doctor to ask if she had seen the report. She told me that it looked like the baby had a heart defect, but it could be corrected by surgery after he was born. The obstetrician referred me to a maternal-fetal medicine specialist and arranged for a fetal echocardiogram to be done. We saw a pediatric cardiologist who sat down with us and said your baby has a complete balanced atrioventricular septal defect. This means that there is a hole in the central wall of the heart, and instead of two separate valves between the upper and lower chambers of the heart (the atria and the ventricles), our baby had only one large valve. Oxygenated and unoxygenated blood would mix, and he would have a hard time getting enough oxygen to his body after he was born. The cardiologist said our baby would likely struggle with having enough energy to eat and grow for the first few months, and he would be susceptible to colds and pneumonia until his heart was repaired. But I was focussing on the fact his heart could be repaired. He would be ok. We could get past that, and carry on, and everything would be as we dreamed.
And then the doctor said, ‘This heart defect is very common in kids with Down syndrome.’ That I didn’t want to hear. Surgery wasn’t going to fix that. And besides, I wasn’t a special needs mom. I didn’t have the qualifications for that. What did I know about having a child with Down syndrome? I put that out of my mind. Our baby wasn’t going to have Down syndrome. The doctor said, ‘You have the option to terminate.’ And I said, ‘That is not an option.’ My baby was a living human being, even if he might be a little different than I expected. And thankfully, the doctor said ‘Good. You’ve made my job easy then.’ They never brought that up again.
We met with the maternal-fetal medicine specialist and he asked if we wanted to have non-invasive prenatal testing done, to give us a much better idea of whether our son had Down syndrome or not. I said yes, please. There was no risk to the baby with this simple blood test, and I needed to know. We had to wait for two weeks to get those results, and I can remember that phone call vividly. The doctor was excellent. There was no apology, just a straightforward statement. ‘It looks like your baby has a 91% likelihood of having Down syndrome. Would you like to do an amniocentesis to be absolutely certain?’ I declined the amnio, told him we’d carry on assuming that our baby would be born with Down syndrome, thanked him, said goodbye, and sat down hard. I was shocked, blindsided.
Now, I have heard from other parents who have had doctors who delivered a diagnosis of Down syndrome as terrible and devastating news and immediately offered and encouraged termination of the pregnancy. Mothers who essentially had to fight for their baby’s life and value as a person at every appointment. Thankfully our experience was not like that. Our son was treated as a person by the doctors, midwives, ultrasound technicians, and other medical staff we encountered from before he was born, and we were immediately given good resources about Down syndrome and connected with a local support group. While we were processing the news of his diagnosis, we were not pressured in any way, nor were we given a negative impression of Down syndrome.
So the second half of my pregnancy was not a smooth and stress-free experience as we hoped. We loved our baby, and believed he was a gift from God, but we were afraid for him. What would his life look like? Why did so many people choose to terminate when they got a diagnosis of Down syndrome? Was it so scary? Would he have such a difficult life? Would the rest of our children struggle because of him? It took a bit of time for me to be ready to reach out to the support that was available from other parents. What I heard from them surprised and encouraged me. I didn’t hear about suffering or disappointment, regrets or sorrows. I heard about joy, love, acceptance, growth, and delight. Struggles at times, of course. Children with Down syndrome are prone to more health challenges, which can be difficult, but overall, the mothers that I spoke with shared their pride and joy in having a child who was blessed with an extra chromosome. Their lives were normal, aside from a few extra appointments here and there.
Though it took a bit of time to process the news that our baby was going to be a little different, by the time he was due to arrive, we were past the shock, and simply excited to meet him. I went into labor naturally at 38 weeks and our baby boy arrived after a few hours. I held him briefly and then he was whisked off to the NICU for some breathing support. We named him James, because he was a good and perfect gift. The staff at the hospital were excellent. Many of them went out of their way to congratulate us and tell us that James was a perfect baby. He stayed in NICU for a week, weaned off of supplemental oxygen and to our surprise, he managed to learn to breastfeed.
I spent almost every minute at his bedside. It was wonderful to take him home and be able to care for all my children under one roof. Will’s parents live nearby, and they were such great support, stepping in and caring for the rest of the kids while we were in the hospital.
James behaved pretty much like any other baby. He ate, slept, cried, smiled, rolled, and grew. He grew a little more slowly than the others, but more quickly than the doctors said he would, and we thought that was great. However, the doctors had told us that the babies who thrive before their heart is repaired are compensating for their heart defect by constricting blood vessels in their lungs. And this is what James was doing. He was developing pulmonary hypertension – a serious complication that is difficult to manage and treat.
His heart was repaired in February when he was 5 months old – just a tiny little guy about 14lbs. We traveled out to Toronto, bringing the youngest kids to my parents’ house a couple of hours away, and leaving the older ones with Will’s parents at home. We handed him over to the anesthetist early in the morning on a Tuesday and waited anxiously for news of how he was doing for hours. Finally, in the later afternoon, the surgeon came out to tell us that they were done. The repair went well, and James was in recovery. He stayed in the hospital there for 8 days, during which time we gained some grey hair, and spent a lot of time sitting by his bedside listening to beeps and alarms.
We were so relieved when we were able to take him home. The worst was behind us. His heart was fixed and he would grow and thrive.
Unfortunately, we also took home sick children. Our youngest two had picked up Influenza A while away from home, and James caught it immediately. He developed a fever, became congested, and his oxygen levels dropped. We could see him working hard to breathe, and he was admitted to the children’s hospital for three weeks. Those were long tough weeks as I stayed with him the whole time, still nursing him. The children’s hospital is an hour from home. Will would travel back and forth between home and hospital, trying to keep the kids at home well cared for, his job site running smoothly, and make sure that James and I were okay. Finally, he was well enough to come home, on oxygen. That was something new – a baby tethered to an oxygen machine. But we quickly adjusted and were so thankful to be home together again. Hand sanitizer was set up all over the house, and we tried to get everyone to wash their hands as often as possible. James needed to stay healthy!
Two or three weeks later we were back in the hospital. A common cold bug put us back in for a week. Home again for a couple of weeks, and then another cold knocked him flat. He was lethargic, not interested in eating too much, stuffed up, and miserable. I called the hospital and they suggested we bring him in to get checked out.
I packed up the other little ones at home and brought them to my mother-in-law, telling them I might have to stay at the hospital with James for a little while. James hated his car seat, and so I wasn’t too surprised that he was miserable when I took him in through the doors of the Emergency Department at the children’s hospital. But I was shocked when they checked his oxygen levels and he was at 70%. The congestion in his lungs was terrible and his heart couldn’t keep up. His heart valves were leaking, and the blood pressure in his lungs was more than double what it should have been. We were swarmed with medical staff and rushed into the critical care unit. Will came and joined us at the hospital as soon as he was able.
James continued to decline, and needed to be sedated, intubated, and put on a ventilator. I stayed at the Ronald McDonald house next to the hospital – a wonderful place for families with hospitalized children. James went from bad to worse. He was switched from the traditional ventilator to an oscillator, put on 100% oxygen and nitric oxide to try to bring down the pressure in his lungs. He had IVs in every available limb and in his head. His digestive system stopped working and he was put on TPN – nutrients via IV. His body swelled up, making him barely recognizable. His lungs collapsed. He wasn’t processing fluids. They considered dialysis.
I would wake up every morning with a knot in my stomach, freezing cold even though it was now late spring, grab a quick bite to eat and rush over to the hospital, not knowing what I would find. I often came in to a crowd of doctors, nurses, respiratory therapists, and interns huddled around James’ bed trying to pull him out of a crisis, and figure out what to try next. Several times the intensivist told us they were out of options, and there was nothing else they could do for him.
We prayed, and our friends and family and churches in the surrounding area prayed too. And James began to recover. Agonizingly slowly the settings on the ventilator were turned down. He would go back and forth, higher and lower, but eventually, he was extubated. We took almost every possible detour on the way out of the critical care unit, developing one complication after another – clots in his jugular vein and femoral vein, addiction to the heavy narcotics used to sedate him, a problem with his lymphatic system because of the high pressure in his chest from the ventilator (chylothorax) which meant he had to be tube-fed on a restricted diet for 6 weeks, difficulty weaning off the IV medication and switching to oral medication – but after eight weeks, we brought him home again. He was on oxygen and tube feeds, needed injections twice daily to break up the clots in his veins, required medication around the clock, was addicted to morphine and was so skinny his backbone stuck out.
But it was so good to be home! We protected him as carefully as we could and prayed for him constantly. He has never looked back. God has blessed him and us immensely.
That hospital stay was two and a half years ago now, and James is thriving. He returned to breastfeeding (I had been pumping through all of this), weaned off the oxygen, and off all his medications, except his thyroid supplement. He is now in the 80th percentile for height and weight. He runs, climbs, throws, and yells. His speech is delayed, as is common among kids with Down syndrome, but he is learning to sign, and generally makes his needs and wishes known pretty clearly. We visited the cardiologist and the respirologist in the last month and the pressure in his lungs is finally normal and his blood oxygen levels are excellent.
Our other children did struggle a bit with the chaos and insecurity of those weeks and months of hospitalization. We noticed some extra clinginess and anxiety among the younger ones especially for a while, but they have also recovered from that.
I had a conversation with my oldest daughters the other day, talking about medical advances and possibilities, and I said if there was a way that we could have prevented James’ medical difficulties and limitations, I would have been all for it. And my daughter said, ‘Mom! I love James the way he is! I wouldn’t want to change him at all!’
Down syndrome has been a blessing to our family. We have learned more about acceptance and unconditional love, and what it means to be human. We have grown in our appreciation for health and strength, and applaud every milestone and accomplishment. Our faith in God has been strengthened. Our difficult days have made us better people, and we are thankful daily for the wonderful gift of our extra special little man.”
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