That title may sound shocking. The truth is that nearly 1 in 100 babies born each day have a congenital heart defect (CHD). Some go unnoticed. Others become apparently within a few days or month of birth. Then there are those that (thankfully) are noticed before birth and require surgery within days of arriving in the world. This week, February 7th – 14th, we are going to highlight on our social media pages areas of all things CHD, but today want to share with your a bit of our heart journey.
It may be shocking, since most of Nursing Decoded is centered around adults, educating and empowering others on their own health journey, but those on the other side of the keyboard also have family health challenges that they navigate (also with the help of others!)
Being a nurse, a nurse practitioner is a skill, a passion, a calling – but it is also a choice.
Being a parent of a child with a life threatening condition, one that you have no control over and no means to bargain, plan, or fix is a feeling that no parent should have to experience.
Yet, each day, the heart mom/heart dad/heart family badge is given to families who never applied; and they begin their journey usually frightened, overwhelmed and without knowing anyone else who has walked down this path.
So, this week, while we want to make you aware of our heart warrior, we also want you to know how so many children are thriving, surviving into now what is the largest groups of Adults with Congenital Heart Defects.
Most importantly, we want to introduce you to the support systems that envelope heart kids, heart parents, and the health care teams that research and care for them.
All week on our Instagram, Twitter and Facebook pages we will be talking about all things CHD! We have SO much planned on our social media pages – please follow along!
- MONDAY – Statistics. Facts. Information.
- TUESDAY – Support for parents and families
- WEDNESDAY – Black History meets History, this heart pioneer story is amazing.
- THURSDAY – Research & Funding
- FRIDAY – Camp Odayin
- SATURDAY – Adults with Congenital Heart Disease, our next challenge
- SUNDAY – HAPPY CONGENITAL HEART DEFECT DAY! (Ok, fine, Happy Valentine’s Day, too)
Our Heart Journey
“Congenital Heart Defects. Bet you never heard of it? Neither did we before our 20 week ultrasound with Owen. Here we were just looking to find out if we were going for the boy trifecta or if a girl would make an appearance. Deep down – you really just want healthy. We didn’t get that. I clearly remember the ultrasound tech typing in 4 chamber heart but her mood went somber. Something was wrong. Finding this BEFORE he was born was the blessing we were given. We could research, obtain the knowledge, interview MDs – get the best team set up before his big arrival. This is my FAVORITE ultrasound photo of Owen – his little hand ready to give the fist bump that it was all going to be ok. We were going to get through this – together.”
First Surgery – Four Days Old
“My FAVORITE photo after he was extubated and started opening his eyes. Doesn’t matter that I worked in a hospital and I had knowledge of everything going on. When it’s your child, your three day old baby, you need to strength and support of the medical teams. We were in amazing hands with the entire team at Children’s Hospital of Wisconsin once we arrived. We had a delivery plan but Owen had other plans.
Arriving 4 weeks early threw everything off – but everyone at our delivering at our local hospital NCH and then transferring to CHW was everything we needed to get us through the first days. The amount of doctors, nurses, techs and staff that were involved during the first few hours and days – there’s no way I could every thank them all enough. I wish I could say we were a unique case – but with CHD there are many, many more families that have gone through this and just starting their journey.”
Second Surgery – Two Years Old
“One of the scariest moments of being a heart parent is the second you hand your drowsy, scared child over to the surgical team & watch them walk away to the OR as the doors close in front of you. Then you wait. And wait. Owen has two heart surgeries under his belt. One left side thoracotomy to fix his aortic arch at 4 days old. The second was just after his second birthday & was open heart to clean up & repair his aortic & mitral valve. Luckily he still has his own valves – but will need them replaced sometime is his life, probably late teens/early 20’s. Until then he runs, jumps, swims, plays in the snow, wrestles with this brothers, loves his iPad, threatens to start playing hockey & enjoys showing off his scar.”
Now, nine years later, we have an almost 13 year old son who still amazes us every day. His journey will never be over. We have either echos, MRIs, cardiac stress tests each year and manage blood pressure medications. We continue to live each day, but also knowing that the future WILL hold another heart surgery.
This very morning, a few miles away, another heart warrior friend is in the operating room. Her parents are being showered with prayers, thoughts and strength, and their daughter is in the hands of the cardiac team. There is usually little warning that another surgery will be on the horizon, and even when you know, you are still never ready to return to the
Knowledge is Power
If this is the first time you have heart of congenital heart defects, or know someone who is in this battle, please take the time this week to do the most important thing you can do – share any and all this information. Knowledge is power. And if doesn’t help you, it might help another parent or family member trying to support their heart warrior.