We nearly lost our son many times. Infections, multiple surgeries, among other things kept us on our toes. By the time my son was two, I had learned that doctors don’t know everything and there is no one way to treat any child for any particular illness. I can remember being second-guessed by doctors and surgeons and being accused of not feeding my son and not being a good mom
Just like so many other parents, our journey started off finding out we were having a baby. So often people would ask me if I was having a boy or a girl and I would tell them that I didn’t care as long as the baby was healthy, but to be honest I really wanted a girl. Although I had the sneakiest suspicion that I had a boy anyway. Either way, we had our rainbow baby and we were very happy.
Like so many, we did not know that our son had physical problems before he was born. The only hint we had was a single umbilical artery that was found at his 20 week scan but subsequent scans showed he was fine so we figured it was a fluke. Well, It was not a fluke and something was very wrong. When he was born the first thing we noticed was that something sounded really off about the way he cried, it seemed oddly melodic.
After my son was rushed off to the NICU because he was 10 weeks premature, I thought everything was fine.
After having multiple complications that landed me in the ICU with, at most, a 20% chance of survival; I didn’t get to see my son for two weeks. My poor husband had to go between the two of us who were fortunately still in the same hospital. He brought me pictures of my son and told me everything was going to be OK. He was trying so hard to stay positive for his son who had a 50/50 chance and his wife who was pretty much told she was going to die from the moment she made it to the ICU. Obviously I’m not a ghost so I survived.
It was easy to stay detached during that time because I had my own recovery to consider and I had not yet had an opportunity to bond with my son. After I was moved to a step down unit I was allowed to see him for the first time and I have to say it wasn’t easy. It was surreal almost. We were both covered in bruises from failed IV’s and blood draws. We were both still healing and trying to get out alive. He was still paralyzed from the surgery. All I could touch was his foot.
The day after I was released and sent home on bed rest without my baby, I was right back at the nicu to visit him the next day even though I could barely even walk without resting every 10 feet. I couldn’t think of anything else that I could do at the time except cheer him on. My roughest day in NICU was the day that he tried to stop breathing over and over and over and over again. I lost track of how many times in a half an hour my son stopped breathing and the nurses had to rub his back to make him breathe again and it struck me that day how fragile he really was. I was scared to bond with him at that point because I didn’t know if he was going to live long enough for me to bring him home. I started to cry in the middle of The NICU and I had to stop myself because I didn’t want to break down in front of people. I don’t know how to pretty cry… So I went to my car as fast as I could and I just screamed and cried and beat my steering wheel with my hands until they were swollen and bruised.
Over the next couple of months while my son grew, I was told he had reflux. I don’t think I understood exactly what that meant. I think I was kidding myself at the time that once he got out of the hospital, just like me, he would be right as rain.
When he was about to graduate into a step down unit, a doctor sat down with me and tried to explain to me that he was going to have issues throughout his life and that he would need dilations and other procedures in order to thrive. Part of me heard him but part of me was not ready to understand and most of the things that he said it went right over my head anyway. He may as well have said nothing at all but looking back he was the only person There who tried to talk sense to me. I was so ignorant at the time of the things that we were going to be facing. I didn’t even know what these things were and I took everything at face value rather than look it up myself to learn whatever I needed to know.
I had to salvage what was left of my maternity leave so I had to go back to work until the day that Tristan was released from the NICU. We were so happy to be home and together. It was a very short-lived happiness. New babies don’t sleep and babies like mine sleep even less. His reflux was so bad that as soon as I would feed him he would throw up and then I would feed him again and he would throw up and I would feed him again and he would throw up and it got to where neither of us were sleeping I had no idea how much this kid was actually even eating because it seems like he threw up everything he ate. I accidentally overdosed him on his medications multiple times. Honestly, I don’t know how the kid survived.
I felt like no matter what I did my kid was doomed because he had a mom that was so exhausted she could not even manage to give him his medications the way they’re supposed to be done. Why could the nurses do this but I couldn’t?
I thought to myself that I just must be that terrible of a mom because the nurses could keep him on the schedule and keep him gaining weight but I can’t even seem to feed him. I wasn’t even able to breast-feed because of the trauma from his birth. I was still severely anemic at the time as well and doing my best to heal and going through postpartum depression Along with the stress of having a baby with special needs and mourning my dream of motherhood. Or… What I thought motherhood would be.
When the reflux got so bad that he started having death spells I realized that we had a very long road ahead of us. When doctors told me he needed surgery to stop the reflux I tried to wait to see if it will get better and he almost died because of my reluctance to surgically alter him more than he already was. The idea that he was going to have a permanent feeding tube not only broke my heart for him but for me too because it was not only an outward representation of the fact that he was not normal, it was an outward representation of my own failure to take care of my baby.
This time when he had surgery I got to be there with my husband and we watched them take our baby down the hall to cut him open. This time it was different because we had had time to bond and get to know each other and I was handing someone a scalpel and saying go ahead. I felt like I was doing a great injustice to my kid. Looking back, I did what I had to do. Someone should’ve told me to bring a box of tissues because no matter how many times your child takes a walk down that hallway you’re going to need a box of tissue.
The first couple of years were a haze of exhaustion, depression, fear, panic, and learning. My husband was working full-time and going to school full-time as well so he was rarely ever home. My son was never home from the hospital from 1 to 2 weeks at a time before something else for happen and he would be there again. Even a simple cold would land him right back in the hospital. It was like jumping from one emergency to the next without let up. Looking back I can see why we might have some poster medic stress over this. I should correct that… We definitely have PTSD over this. There’s no might about it.
We nearly lost our son many times. Infections, multiple surgeries, among other things kept us on our toes. By the time my son was two, I had learned that doctors don’t know everything and there is no one way to treat any child for any particular illness. I can remember being second-guessed by doctors and surgeons and being accused of not feeding my son and not being a good mom. Not just by doctors but family members and people who called themselves my friends. People started to judge me because my son was so sick and it hurt. It paled in comparison to what I needed to do though so it was easy to move on from that. It still stings a bit though.
Our children are extraordinarily unique and a one-size-fits-all treatment approach doesn’t work for everyone and after strictly listening to doctors and not doing my own research almost cost me, my son, a few times, I learned to rely on my gut instincts. In my experience, the gut is never wrong.
As my son got older, we discovered he had many other issues in addition to the esophageal atresia and tracheoesophageal fistula. We learned that he had a single kidney, dysphasia, a heart defect, scoliosis, fused ribs, developmental delays, chest wall deformities, lung disease, kidney disease, tracheal and bronchial Malaysia, Hydromyelia, syringomyelia tethered spinal cord, autism, ADHD, fused vertebrae, and probably a few other things we don’t know about yet. I don’t know what the future has in store for us but I’m pretty sure it’s going to be exciting. There’s never a dull moment with this kid. He’s worth every single battle though. And a thousand more.
Some of the hardest things about having a child born with birth defects is that your friends fade away, Family members accuse you of having Munchhausen syndrome by proxy because it seems like every time you turn around your kid is sick again. Some people may call you dramatic Since every time they talk to you you speak as though your child were at deaths door. Usually they are a knocking… Fortunately death has not answered in our case just yet and I’m grateful for that.
My world got a lot bigger when I met Steve Wales. Funny I don’t even remember how I did it. I just remember being grateful that they were people out there who were working to help people like my son. Kids like him don’t have much of a chance unless they have a family who loves them and is willing to do anything for them. And our kids need all the help they can get. I hope that even though my story is a continuous one that has remained difficult over the years that it does not scare you. It’s not meant to. Some stories are fraught with difficulties like ours and some never have an issue after they get repaired. It’s important to know all sides and not just the ones that are an overwhelming success. Most cases are a middle ground of good and bad. It’s important to remember that yes even though my son has gone through many difficulties and it has broken my heart into 1 million pieces 1000 times over that we keep going and working and striving to make things better and it’s what we will continue to do for long as he lives… maybe even longer.
Our Journey is by no means over. Our son and Us have a long way to go. We look to all of the other parents and adults who were born with this condition to guide us and help us understand what to expect for our children and we’re very grateful for those who are looking to help our children have not only a happier life but a longer life.
Probably the most important lessons that I have taken from being a parent of a child like my son are these:
And for the record, there are a lot of lessons so I hope you have time to read them all. They may not make sense in the beginning but anyone who has lived this life will tell you that they are useful and if not well they’ve been useful to me so I’m gonna share. Take what you can from it.
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