“Ten?” I questioned. “Why is that?”
“Because he’s the best brother in the whole world!”
I smiled, remembering our worries that a little brother with special needs would negatively affect our other children. Would they resent him? Would they feel neglected or burdened? These worries had been put to rest long ago. They were now just a memory of a time we call “the fog.”
It had been a very dark fog, and so incredibly thick that we couldn’t see out of it. We were afraid it would never lift.
My husband was in the middle of his medical residency program. I was working part-time as a Physician Assistant while raising 18-month-old Micah and excitedly expecting our second child. Our world changed in an instant, when, at our routine ultrasound, our doctor told us he suspected that our baby had heart defects and wanted us to see specialists at Seattle Children’s Hospital.
Only a few days later, we sat in silent shock as the Seattle doctors outlined one major problem after another. The list of problems just kept coming, and we were too stunned to process it all.
Our baby boy had very severe heart defects. Even to our medically-trained minds, the diagram of his heart looked nothing like a heart when the doctors were done marking it to show us all of the problems. The left side of his heart was too small to support life (hypoplastic left heart). He also had a complete atrioventricular canal, which is a hole between the top chambers of the heart (ASD), a hole between the bottom chambers (VSD), and the two valves in the middle of his heart (mitral and tricuspid valves) were fused into one common, leaky valve. In addition, his aorta was severely underdeveloped – too small to supply enough blood to his body.
He also had a number of other problems, which literally ran from his head to his feet. Not only was he significantly small for gestational age, but he also had enlarged ventricles in his brain, and fluid around both kidneys, and two club feet, and too much amniotic fluid surrounding him, and shorter than normal long bones, a missing nasal bone and some other markers for a “syndrome.”
* * *
As we sat in the hospital room, reeling from shock and absolutely devastated, the cardiologist began to outline a series of four open-heart surgeries that would attempt to fix our baby’s little heart. The prognosis? Not good. Especially bad if he had Down syndrome. Our doctor told us he had seen ten babies with hypoplastic left heart and Down syndrome born at Seattle Children’s, and none of those kids lived. The surgeries might extend our son’s life by two or three years, but they had never seen a child live beyond that. And, these were children who did not have the aorta or AV canal problems that our son did.
The doctors were quick to offer an abortion. When we said no, they recommended an amniocentesis to determine if our baby had any chromosomal abnormalities. His doctors would need this information when he was born, so I reluctantly agreed. The results revealed that our son did indeed have Trisomy 21, or Down syndrome.
At that point, they told us he had a 0% chance of survival. If he lived to be born, which was unlikely, he would probably only live a few hours.
“There’s really no need for you to go through the rest of this pregnancy,” the doctor told me. As my husband left to take care of our toddler, she added, “Don’t let your husband influence what you do with your body.”
“No! No abortion.”
Despite my protests, the doctor continued, “I know you have moral objections to abortions, but we could schedule you for an early induction.”
“What do you mean?” I asked.
“Well, if we induce labor within the next couple weeks, the baby would be too young to survive.”
“That’s the same thing as an abortion,” I told her. “No.”
Over the next several weeks, we mourned the loss of our baby. We sobbed, we prayed, and eventually we came to accept the situation. We felt as if we had already lost our son, yet we longed to hold him. We prayed that we would be given a few moments with him before he died. My husband said, “If all he ever knows is that he’s loved, that will be enough.” Our family and friends were all on their knees, too, and somehow this gave us some comfort in the midst of the thick fog of our grief.
We named him Matthew, meaning “gift of God.” His middle name would be Nicholas, for St. Nicholas of Tolentino, the patron saint of dying babies. We really didn’t expect a miracle or even dare to pray for one. We just hoped to hold our son.
* * *
Later ultrasounds showed the problems with Matthew’s kidneys and brain had improved and that the left side of his heart had grown slightly. This meant there was a small chance he could be a candidate for surgery after birth, but we would have to wait to find out.
Late one September afternoon, my doctor found that Matthew’s heart rate was dropping dangerously. I was rushed to have an emergency C-section. Matthew was born weighing slightly over four pounds, too weak to even cry. But, he was alive, and we could hold him. We sat together in the NICU, just staring into his beautiful eyes and drinking him in. The left side of his heart was still too small to support life, so with his AV canal and his aorta only 2 millimeters wide, his little heart was simply too broken to fix.
The doctors said we might have three to six months with Matthew, but we definitely would not see his 1st birthday. We took him home on hospice, prepared to offer comfort measures only. I truly felt like he was on loan from God – entrusted to my care for the short time he had on earth. I knew he wasn’t mine to keep, but somehow I felt honored to be the one to love him and care for him.
Days turned to weeks, and amid feeding tubes and oxygen masks, Matthew’s little personality was appearing. We started to see little smiles, little coos, and the sweetest little giggle I had ever heard. Yet my heart was breaking into a million pieces. How could I bear to lose this little man?
When he was six months old (weighing only 8 pounds), he seemed to be getting a little stronger, not declining as we had expected. We took him back to see his cardiologists. Imagine our surprise to find out that the left side of his heart and his aorta had both grown to normal size!
What a mix of emotions! Of course, we were overjoyed that Matthew was going to live. We had never even considered that possibility, and now we were facing major open-heart surgery. We were also realizing for the first time that we would be raising a son with Down syndrome. We had a lot to learn.
Matthew’s heart surgery was scheduled for when he would be eight months old. On the day of his surgery, doctors discovered that the hole between the bottom chambers of his heart had patched itself. All that was left for them to do was patch the top chambers and repair the valves. The surgery went perfectly, and Matthew spent only five days in the hospital recovering. As soon as he was home he was eating better than ever before and playing with more energy than he’d ever had.
* * *
The dark fog has lifted, and the brightness of our son has taken its place. No longer are we buried in dread and fear. Instead we delight in our healthy eight-year-old who blesses us and his four siblings in ways we never could have imagined. Matthew surprises us every day. He challenges and entertains, while showing us what true joy looks like. His compassion for others is far beyond his years, and he is adored by all who know him. With Matthew, we experience a love so pure, it takes your breath away.
In a world where many children with Down syndrome are never given a chance, Matthew proves that children with disabilities can exceed our expectations in so many ways. I can’t possibly put into words all that he means to our family, or what an incredible honor it is to raise such a precious soul – our little miracle.