Medically Complex Parenting

I was talking to a dear friend recently who’s 8 week old first born had to have brain surgery to insert a shunt to drain fluid caused by a cyst. She was sharing how as first time parents they were just so blindsided by the entire experience. And that’s just it -we have expectations of how things should be and how we will have healthy children and an easy birth. And in this world, that just isn’t the case. Being a brand new mom AND a medical advocate is HARD. And the emotional ups and downs of having a new baby and seeing your child struggle medically is rough on the soul. The guilt of wondering if it was something you did or didn’t do - it wears on you.

Bill and I didn’t have the typical first born experience most parents do either. Cade faced struggles from the moment he was born, some more challenging than others. I was thrust into the world of parenting a medically complex child at 27 with zero idea what all we would face over the coming years with Cade. Bill left on his first Iraq deployment just 6 weeks after Cade was born - I was a new mom, living in a new state, with a child that had many complications. At Cade’s 8 week appointment the pediatrician heard a heart murmur. A congenital heart defect Cade was born with we later learned was called Aortic Valve Stenosis. Cardiology was the second specialist we would see in his short little life.

I remember the sweet, sweet pediatric cardiologist in North Carolina who sat with me and my friend (who went to the appointment with me) as he explained AVS. Cade has been fortunate in that his AVS remained mild for YEARS. AVS has to be surgically corrected eventually - some people make it to their 40’s before needing the repair and others don’t even make it to their toddler years. Last year, Cade’s AVS was starting to move toward the moderate category. Mentally we’ve been preparing for this as we knew this would happen eventually. Yesterday, after his echo and stress test, they shared his is now fully in the moderate category and the leakage in his value is also moderate. What they start to really monitor now is how the rest of the heart is compensating - which as of yesterday, the rest of his heart is handling things well. But because of how rapidly he progressed into moderate after so many years stable, they want to monitor him more closely as surgery is our likely next step if it continues to progress as it has.

We will follow up in 6 months for all the same tests and then determine if we can continue to watch and wait or if we have to make some decisions. Unfortunately, because of the leakage he would not be a candidate for a balloon - where they open the two valves that are stuck together. He would need something called the Ross Procedure - where they take the pulmonary valve from the left side of the heart and replace his defective valve in the right side and replace the left side valve with a replacement valve. If you you enjoy medical stuff you can read more about it here.

We don’t know what’s in store for his sweet little heart, but the first thing I said to Bill as we left the room was “well, I’m sure glad he didn’t have to have brain surgery last week if he’s going to need heart surgery next year!” And we laughed because this is our life with Cade and it’s normal to us. I know that God has had His hand in all things Cade since the beginning. He enjoyed chatting up the ultrasound tech and divulging most of our home life to her in the 30 minute echocardiogram. I can only imagine the things people hear from Cade at school and work.

Medically complex parenting is hard. I often feel like I’m in flight or fight - wondering what is going to hit us next. I struggle to slow down, because when I do, my mind wanders down rabbit holes. Not that all parents don’t experience this is in neuro-typical parenting, but man, it sometimes just feels really heavy.

But tomorrow is the last day of school before winter break and this year I am going to force myself to slow down, rest, and be present. I know God has a plan with Cade, He always has. I share here today because for me (and many special needs and medically complex parents) - it is really hard to verbally share what we are facing. It’s not really small talk or lunch table conversation to say “guess what, Cade might need open heart surgery in the next year or so!”

We all have stuff, don’t we? Sometimes it helps to know what others are facing and processing so you know why they may seem extra tired or a little snakier than usual. Sharing is also comforting to other walking through similar things. So if you are facing something hard or scary or need someone to process something - don’t be afraid to share. It takes a village in parenting - make sure you lean on yours.