1 in 7 babies born in the US spends time in the NICU for issues as varied as prematurity, infection, birth defects, and gestational diabetes, to name a few. On this episode, we spoke with a friend who’s all too familiar with hospitals, NICUs, and procedures—and not because she happens to be a pediatric surgery nurse.
Becky Bilodeau is a mom of 2 very active boys, Noah (9) and Jacob (3). Her husband, Joey, is an EMT.
In the fall of 2017, Becky was 20 wks pregnant with her second child and getting a routine ultrasound. When the technician said very little and called the specialist in, the alarm bells went off. That scan revealed that baby Jacob, the son they were waiting for, had 3 chambers of his heart, rather than 4.
Quickly and unexpectedly, Becky and Joey were shunted upstairs to speak to a high-risk doctor, who tried to explain the severity of the situation. After the overwhelming amount of medical information–even for medically trained parents like the Bilodeaus–the doctor also told them they had two weeks to make a decision whether or not to terminate the pregnancy.
Come what may, they decided to press onward and carry Jacob as long as possible. Then followed monthly fetal echoes, cardiologist appointments, and learning about CHD (congenital heart disorder, or congenital heart disease). Jacob would be born with half a heart and would need open heart surgery soon after birth.
Jacob’s diagnosis is a mouthful: hypoplastic right heart syndrome with pulmonary and tricuspid atresia. His right ventricle was almost non-existent, and his pulmonary & triscuspid valves were not there.
Once Jacob was born, his parents had only moments to hold him before he went to the NICU for treatment. The NICU, says Becky, is a place of roller coaster emotions. Often, Jacob would be doing well and making progress only to have some emergency occur and be in “guarded condition” the next day. She feared leaving the hospital lest something happen in her absence.
Meanwhile, she and her husband were using up their allotted work leave, and their older son, Noah, was essentially living with his cousins and nearby family. The Bilodeaus relied heavily on family for help with child care and on their small group and church community for emotional and spiritual support. They learned a new level of trust in God and others.
In a social media post just before Jacob’s first major heart surgery, Becky posted a photo of her son. It showed him with “what I thought was his ‘perfect chest’. Afterwards, Jacob would always bear scars of his (multiple) surgeries. Becky learned a different way of seeing Jacob, though, since Jacob (now 3) hides his precious heart and proof of miracles behind that scar.
In his short life, Jacob, a blonde and active boy with a contagious smile and cheeks for days, has endured 5 heart catheterizations and two open heart surgeries (a BT shunt or Norwood surgery and a Glenn surgery), with one more (Fontan surgery) in the near future.
CHD is more common than all forms of childhood cancer combined, but research funding is 10x less.
www.brettboyerfoundation.org/donate #heartwarrior
In a post about being a CHD parent, Becky wrote:
- It’s being heartbroken by many recommendations to end the pregnancy
- Being terrified of pediatric cardio office for fear of what MORE they’ll say
- Feeling like sitting thru med school to learn about the condition; being overwhelmed
- Scared for every follow up visit b/c what if something else is found
- Several hours of ultrasounds @ every follow up during pregnancy
- Meeting your son & only having seconds before he’s whisked away
- Waiting hours
- Open heart surgery @ 6 days old; handing him over after being told they’re going to stop his heart for an unknown time
- Feeling like you’re abandoning your healthy child to care for the sick one
- 6 wks later, going home without the reassurance of a machine monitoring everything
- Meds multiple times/day
- Doing it all again a couple months later
- Catching up & growing; then declining and knowing another surgery is nearing
- Being part of a community/family (Hand to Hold—NICU babies parent support (free app in english & Spanish; @handtohold)
- Learning to trust God
- Learning it’s ok not to be ok and to ask for help
Marriage
Becky and Joey had a very long period where they didn’t see one another. While Jacob was in the hospital, they worked different shifts so one of them would always be available at home with their older son and one would be available at the hospital. They became a “divided” family in some senses for awhile since Jacob couldn’t go all the places Noah needed to be. Thankfully, family and friends intervened to give them much needed family time, or to allow them all to attend Noah’s baseball games.
There wasn’t a choice, and it wasn’t a matter of “being strong,” Becky says. “We just did what we had to do to keep going.” It did get better.
They’ve sought counseling, even early during her pregnancy with Jacob. It’s helped them communicate better and be able to show each other grace. They carried the stress of their son’s diagnosis differently, and Becky recognized her need to reduce the emotional toll through exercise. Joey knew Becky’s well-being benefited all of them, and he made room for her to be able to do that.
From an article on childrenshospital.org: Clinical social worker Katherine Preston, LICSW, reassures families that a child’s illness does not automatically spell the end of the parents’ relationship. Based on studies of families facing childhood cancer and diabetes, Preston says, “the divorce rates are no higher among families whose children have a chronic illness than in the general population.”
This isn’t to say adult relationships don’t often take a back seat when a child is in a medical crisis. As one parent, Katie Litterer, describes it, “there are so many extra layers of stress: worry over your child, navigating jobs, caring for other children at home, costs of medical care, hospital visits.” And the list could easily go on.
Lessons Learned
In an article for The Gospel Coalition, Laura Baxter, whose 18-year old son was diagnosed with schizophrenia, said she spent five years crying, and praying, and struggling to understand what had happened. Eventually she noted the importance of developing an attitude of thankfulness in spite of her suffering.
1. Camaraderie
We were forced to open up to our friends, to rely on our church family. And lasting bonds were formed in those trenches.
I gained “virtual” friends from around the country, and we took comfort from each other. These are people I never would’ve known apart from our shared crisis. I am thankful for the many relationships that came into being, and were paradoxically enriched, by my son’s illness.
Becky echoes this, saying she reaches out to others on her same journey, sharing the hope and encouragement she needed at different stages herself. CHD communities and parents, while their individual stories are all different, can offer one another support in particular ways other parents can’t. They know the jargon. They know the emotional toll.
**There is a free app for parental support for babies in the NICU called Hand to Hold, available in both English and Spanish.
2. Compassion
Sadly, in the past, I also avoided suffering people. But my son’s experiences have taught me that mental illness does not change our essential humanity. My son was still my son, bearing the image of the living God, deserving love and respect.
Through our family’s crisis, I was given new eyes to see the suffering around me, especially parents with adult sons who did not or could not meet social expectations. Now, when my students speak of anxiety and depression, or changes in medication, I have ears to hear. I am thankful that God softened my heart through my son’s journey.
3. Communion
As C. S. Lewis wrote, God “shouts in our pains.” When my world fell apart, where could I turn but toward God? My prayers increased in frequency and urgency. At church, I clung to every worship song with tears. I pored through the book of Job, wondering together with the patriarch whether God had abandoned me. Year after year, I searched for the hand of God in the life of my son, and in my own life.
Miraculously and mysteriously, I found him walking with me every step of the way. Like Job, I got to experience God up close, to see him with the eyes of faith (Job 42:5).
4. Contentment
Job famously said, “Naked I came from my mother’s womb, and naked shall I return. The LORD gave, and the LORD has taken away, blessed by the name of the LORD” (Job 1:20–21). That was not my first response to suffering. I couldn’t understand why a good and all-powerful God would allow the destruction of my son’s beautiful mind.
Slowly, I came to realize that suffering is an inescapable part of our fallen world. God does not, despite the teachings of prosperity preachers, promise health and wealth on this earth. The meaning of my life, and the meaning of my son’s life, does not depend on our productivity, our achievements, our Instagrammable moments. God only asks that we remain faithful in the situation where he calls us, day by day. I am thankful for this hard-fought lesson—although I wish I’d learned it earlier and easier.
The term “half-hearted” means to do something without enthusiasm or energy. Jacob’s diagnosis is ironic because Jacob defies this definition! He is not “the kid with the heart issue”. He is buoyant and lively, full of smiles and joy, loves karaoke, plays with cars, loves Paw Patrol. The Bilodeaus have never once regretted their decision to press on to a life with him in it.
