What I’ve Learned Being a Parent of a CHD {Heart} Child

I am so thankful this is behind us. By “this” I mean our 8 year old son’s third open heart surgery. Our oldest son was born with a very specific, very rare congenital heart defect (CHD) called Truncus Arteriosus. CHDs are present in about 1 in 100 live births, and his specific defect accounts for only 1-2% of those births. Less than 1 in 10,000 has what he has.

What I’ve Learned Being a Parent of a CHD Child

Children with Truncus Arteriosus must have an initial open heart surgery shortly after birth to create a functioning pulmonary artery, which had misformed in utero as a single “pulmonary trunk” instead of forming both the aorta and the pulmonary artery and to close the large VSD inherent in all Truncus cases.

The part they use for this will be outgrown usually by 4-9 years of age, and will need to be replaced with a larger “part” to allow adequate blood flow through the heart itself. Surgery is required every time the “part” becomes too small for their bodies and needs to be increased.

Our son had a hard time of it in the beginning. His little body had a hypertensive crisis shortly after his first surgery and after a 4 week stay in the ICU (and home AND back again) they decided to go back in to fix a hole he had literally ripped back open during that crisis in recovery. It was awful. It is truly a miracle that he is happy, {relatively} healthy and to be quite frank, that he did not incur any brain damage during his last episode.

After his second surgery – at the age of 5 months – he crashed for the second time and was given open-chest CPR for over 45 minutes. His heart was in a dangerous and hard to recover from rhythm so he was placed on ECMO, a truly external heart and lung machine (similar to bypass) and he remained supported by this machine for over a week. To say that he is a survivor is an understatement.

Knowing that he would need to have more surgeries his entire life, Paul and I – and he! – went into this latest chapter of his story with optimism and as much courage as we could muster.

He. Was. Amazing.

.

He was brave and strong and matter of fact. He took it all with a determined will and such grace! I never heard him complain one time.

This time around I decided to take notes and to help those of you {heart surgery or not!} to deal with any extreme medical issue related to your children. I do hope that you’ll share this with your friends facing procedures with their own children.

What I found helpful to me…

Do your own thing, and don’t you dare feel bad about it.

When you are sitting in the surgery waiting room in a children’s hospital – and your child is being operated on – you do whatever makes YOU feel good.  If you’re like us, you have family far and wide that comes to support you.  If you need a minute alone do not feel bad about taking that minute, that hour or that morning to yourself.  Do not be afraid to sit in a completely separate section of the waiting room while they watch your other child(ren) with your earbuds and Candy Crush.  Nothing wrong with that.  I worked on the blog the entire time.

Educate, preferably everyone at once.

To save yourself time and your sanity update as many people as you can at once, and only once.  The first set of surgeries I did not have a Facebook page (I didn’t even have a MySpace yet!) so I would literally have to call every person or text every single person with updates, reliving the moment over and over again.  Moral of the story: use Facebook to your advantage.  If you don’t want to put it all out there, consider creating a secret group or a group thread via messages with those you wish to share the information.

Let them buy you dinner!

Any good nurse, doctor or psychologist will tell you that you need to get OUT of the hospital every once in a while when facing an extended stay.  It is good for the body, the mind and in turn good for your child as well.  If you’ve got family or friends in town and they offer to sit with your child while you go to dinner or they offer to buy you dinner – let them.  I have decided that sometimes the only way a person knows to help or offer their shoulder is through a meal.  If in the cafeteria or actually going out – Chipotle counts! – they are putting themselves out there for your benefit.  Let them do this for you.

Do not loudly discuss the details of your child’s operation in the waiting room.

As the parent of a child requiring multiple major surgeries I feel that I have the authority to share this gem with you.  Remember that every parent of a child having surgery, no matter how large or how small, is in the same waiting room as you are.  Try not to discuss the specifics of yours openly and/or loudly.  Hearing how horrible the tonsil removal or ear tube surgeries are is a little grating to the parent with higher stakes of life or death on the line.  Not to say you can’t talk about it all, but use discretion please. There is always something worse happening in the world, even in my situation.

Let them clean your house!

We came home to a clean (and nicely decorated!) house thanks to some close friends of ours and our parents.  Coming home to a clean home is heavenly, especially when you have so many other things to worry about like timing the medicines, changing the dressings, doing lung exercises, relaxing after an emotional week etc.  If you are the friend in this equation rest assured that your effort is noticed, appreciated and absolutely the most inexpensive and valued thing you could provide.  You great friend, you! 😉

Document everything.

Our insurance is starting to mail us letters and explanation of benefits.  I am keeping a master file of all of the correspondence so that I can easily access any record, any bill, any form etc. Now that the surgery part is over, the real fun begins.  Ugh.  You’ll be glad you kept good records.  I even requested our son’s pertinent information from the medical records department.

I hope that none of you ever have to face such circumstances with your children, but I also know better. Do what works for YOU and YOUR family and if you need an ear you can always send me a message on Facebook or shoot me an email.  There a plenty of groups on Facebook for just about every possible ailment for children and adults alike.  Having a connection with other families, even if we never meet face-to-face creates a connection and understanding like no other.

More Heart:

Dear Jimmy Kimmel, Welcome to The Heart Club
A Letter to My Heart Child on His Birthday
What is a Congenital Heart Defect? Statistics You Need To Know From a CHD Mom
Caden’s Feet: Walking the Path of Congenital Heart Defect {CHD Parent}
Living With CHD: Learning Barriers for Children with Congenital Heart Defects
The Day I Became a Heart Mom {1 in 100}