My family members have many complicated medial issues. My son was born with a coarctation of his aorta. He had heart surgery when he was six weeks old and weighed about 3 pounds.
His surgery was delayed a few times due to acute issues such as infections. On the day of his surgery, my parents watched his two co-triplets. My older son was at daycare.
One of the triplets was showing signs of being ill. He was lethargic, not drinking like he should be, and was hard to arouse. I asked my parents to keep a close eye on him. I knew something was wrong. I also knew I couldn’t be in two places at once. I had to be downtown for my son’s heart surgery.
I keep texting my mom asking how he was doing. She told me his feet were cold and she was having a hard time keeping him awake.
The heart surgery was a success. The pediatric cardiothoracic surgeon was practically giving out high fives. My tiny boy was fixed, or so I thought.
We stayed with him post op for a bit. We couldn’t hold him. He was still intubated. He was lying on his stomach, the big gash across his back was glued closed.
Eventually, my husband nudged me that we should go. We drove home. My father handed me my other son when I walked in the door. I was sure he was dead. He was yellow. He was limp. His eyes were closed. His head bobbed to his chest when I picked him up.
Alarmed, I started rubbing his sternum with vigor. He moved, but barely. I took him upstairs and put the thermometer in his armpit like the NICU taught me to do. 93 degrees. That can’t be right. It has to be broken. I’m doing it wrong.
I tried the other armpit. 93 degrees.
It must be broken.
I yelled for my husband. He came and tried the same thermometer while I went to look for another one. 93 degrees.
New thermometer under the armpit. 93 degrees.
I ran to get the car seat to drive him to the ER. My husband called the pediatrician which went to an on call nurse at that point, which was around 5pm. I was packing the baby up, getting things ready to go while he explained to the nurse what was happening. She told us to go to the ER.
I grabbed the car seat to go. She called back. She said she changed her mind and we should call 911.
I don’t remember who called 911, but they arrived quickly. The EMT asked us to take him out of the car seat so they could assess him. His feet were blue.
We rode, sirens on, to the closest hospital. He was quickly taken back to a room, and he was hooked up to oxygen and monitors. About two minutes later, he stopped breathing completely. The doctor tried to stimulate him by jamming his fist into my son’s feet. There was no response. He activated the code button.
About 30 people flooded into the room.
They tried to intubate my tiny boy, to no avail. They bagged him in between attempts. But, he was without oxygen for awhile. They paged the neonatologist who came down from the NICU. I’ll never forget standing in that room, watching all of these people try to save my son. None of them would make eye contact with me.
At one point, I crumpled to the floor, sobbing. Finally just letting the overwhelming panic sink in. I eventually stood back up to watch the monitors, the nurses, the doctors, try to save him.
The neonatologist jammed the laryngoscope down his throat. I watched him put the endotracheal tube in, and take it out, trying feverishly to get it placed in his tiny throat. Every time it came out, it was covered in blood.
Eventually, he was successfully intubated. Eventually, he stabilized. He was transferred downtown, where his brother was, recovering from his heart surgery.
I arrived at that hospital, hours after I’d left my other son. The neonatologist there hugged me as I sobbed. I will never forget her kindness.
My son spent a few days there, in the ICU. He was diagnosed with a viral infection. A simple cold that almost killed him. It’s been said that preemies are tough. But, before they toughen up, they go through hell.
My son came home. He developed a host of neurological issues after his anoxic brain injury. He was always limp. He struggled with holding his head up. He struggled to sit up. Eventually, he couldn’t walk without falling. He had several injuries due to falls.
He had an MRI just after his second birthday that showed no deficits. We took him to two different neurologists and a developmental pediatrician. He was diagnosed with hypotonia and cerebral palsy. He has spasticity in his legs.
He started physical therapy at around four months of age. He still goes to physical therapy every two weeks. He wears casts on his feet at night to stretch out his tight muscles. He wears AFOs during the day to stabilize his gait so he can walk without falling.
He was diagnosed with ADHD last winter. He has mixed type, and it’s severe. He struggles with impulse control and hyperactivity more than inattentiveness at this point. I know as he gets older, this will change. He goes to OT every other week to learn things like turn taking, zones of regulation, and to work on focusing on things.
His teacher told me he’s “a rockstar” in the classroom. He shows leadership skills, empathy, and he’s a math whiz. He doesn’t show any issues with inattentiveness, impulsivity or hyperactivity. I almost cried when she said these things. While it’s just preschool, I’ll take the small wins when I can get them.
I question every decision I made that day. Should I have stayed home? Should I have called off my other son’s heart surgery? How would things be different if I had? Would he have died without that surgery that day?
The guilt and the trauma are insurmountable some days.
This will affect my son for the rest of his life.
I know what that feels like. I know how it feels to have a brain injury and to feel broken because of it.
He knows some of the story. He knows he got sick and a lot people had to come together to save him. He knows he’s different because of all the therapies, and the things he has to wear on his legs. He doesn’t understand ADHD yet. He’s not being medicated yet. I know that’s in his future.
I’m learning the ins and outs of his disorder so I can be equipped to best help him as he grows up.
I hope he can grow up and find something he’s good at, and also makes him happy. I hope he manages to cope with his ADHD symptoms. I hope he keeps up with his stretching so his cerebral palsy doesn’t disable him more than it currently is.
Out of my four kids, he’s the one I worry about the most.