When we were dating, my husband gently informed me that we might not be able to have children naturally. A couple years before we had met, he had gone through a bone marrow transplant and didn’t know if his fertility would ever return. As a precaution, before chemo, he had banked sperm for future use. But there was no guarantee of biological children.
I surprised him by showing relief. I wanted children but, at the time, was terrified of childbirth. This news took the pressure off me. More importantly, it didn’t change my opinion of this man.
Several years into our marriage, we finally started into fertility treatments. (Just using banked sperm required all sorts of tests, trips to the fertility clinic, drugs, ultrasounds, bloodwork, etc. It was a process.) So many people were praying for us. We were elated to become pregnant on only our second try.
We didn’t tell many people, but started eagerly into prenatal care and prenatal/childbirth classes. It was amazing to see a tiny human body at my first ultrasound. There was actually something in there! I devoured books about pregnancy and natural childbirth. All was well until my 20-week ultrasound.
After an extremely long session with the sonographer, we waited eagerly to meet with the doctor. Matt proudly sent out texts to family proclaiming “It’s a boy!”
Then the doctor walked in. Our happy morning was instantly deflated under the crushing blow of words like “anomalies” and “spina bifida” and “clubbed feet.” In all our uncertainties about achieving pregnancy, we had never dreamed that our baby might be imperfect. I was appalled to hear my child had deformities.
Though initially numbed by this news, we feverishly entered a whirlwind of research, being referred to a maternal fetal specialist two hours away, having more ultrasounds and evaluations and meetings with doctors there, then asking to be referred to yet another hospital 7 hours away to be considered for fetal surgery.
At that consultation, we were even more stunned to hear of further anomalies. Our son’s myelomeningocele (opening in the spinal column) was even larger than at first realized, and would most likely leave him paralyzed from the waist down. This didn’t just mean not walking. It also meant not having urinary or bowel control. There was even more spinal deformity, creating a crook in his neck, and one leg was bent the wrong way at the knee. And if that weren’t enough—a strange-looking child confined to a wheelchair and needing constant diaper care for life—he was missing one kidney. The remaining kidney was dysplastic—formed incorrectly with tissue that likely wouldn’t function. Our baby would probably need dialysis, as well. We felt grief mixed with uncertainty.
Most children with spina bifida survive with surgeries and do quite well. But this diagnosis was overwhelming. Our baby might not even make it to term! And if he did, he would require so many surgeries, treatments, and daily care—with constant threats of sickness or complications— that his quality of life would be miserable. OUR lives would have to revolve around caring for our son.
We were made aware—by more than one doctor—of our dwindling window of opportunity to abort.
That was never an option for us. But we did face difficult decisions about what kind of care to plan for at birth. Attempt all the surgeries or choose palliative care, to keep him comfortable until he died? We didn’t want to put a fragile infant through all the surgeries if he wouldn’t survive anyway. But neither did we want to deny our son the help that could save his life.
A firm decision was made nearly impossible when one doctor said that our baby’s diagnoses “were not necessarily incompatible with life.” We couldn’t know until birth if his kidney would function or not. So we would have to wait and see, then decide from there.
The next number of months went by in a whir of endless doctor’s appointments (meaning 4-hour round trips each time!), needles, countless ultrasounds, and growing lists of things to worry about. At the time, I was still teaching full-time. I was worn out from a day with difficult students, and then writing lesson plans for substitutes every time I had to take off work for a doctor’s appointment, and then catching up afterwards. And we had a 2-year-old foster child at home. She was a good distraction, but life was still exhausting.
This time of uncertainty increased the emotional difficulty of our situation. The ladies at church wanted to plan a baby shower. Should we? Shouldn’t we? We didn’t know how to plan. Would our son die, leaving me with all these items to return? Or would he spend weeks or months in the NICU, needing specialized preemie garments to allow for tubes, wires, or whatever other access to his body was medically necessary? As much as I longed for the celebration of a baby shower, it would have been a celebration tainted with uncertainty and grief. We opted to decline the shower, and wait and see.
That spring we were surrounded by so much love from our church family and friends.
EVERYONE was praying for us and for our baby. But how were WE supposed to pray? Did we have faith to ask, believing, for healing? Should we pray, noncommittally, for God’s will to be done? Or just pray for ourselves to survive this ordeal? We never came to a firm conclusion. In the end, we chose our son’s name to reflect this dilemma in our hearts: “Josiah” means “Jehovah heals” or “Jehovah sustains.” Our prayer became, “Lord, please heal our baby. But if you don’t, we know You will sustain us.”
In life or death, our child—so surrounded by prayer from before conception, throughout the pregnancy, before and after diagnosis—would bring glory to Jehovah. And that is what we wanted.