2/21/2014 9:12 AM
By Christy Sillman
I thought pregnancy/labor was going to be the hardest part of being a mother with congenital heart disease, and let me tell you, it wasn’t exactly a walk in the park—but what I’ve found most surprising is how challenging motherhood itself would be in the face of my CHD.
Regardless of how you become a parent – old fashioned baby-making vs. surrogacy vs. adoption – you never really know what you’re getting into until you’re there. It’s a club only parents understand. I thought working 12-hour night shifts in a busy pediatric ICU was motherhood “training,” but little did I know that I’d later view those 12-hour shifts as my mommy breaks!
You see, it wasn’t until I became a mom that I truly felt my CHD. Part of the reason was because of how sick my heart became after pregnancy (I developed postpartum cardiomyopathy), but mostly it’s because I’m suddenly deprived rest, sleep, and the general ability to care for myself because I am now devoted to this tiny little human who needs me 24/7.
Gone are the days of lounging around in PJs, taking the time to cook delicious heart-healthy meals, or sleeping in. My now four-year-old son is a constant ball of energy and I’m forever chasing after him. When I do get “me time,” I suffer from a commonly-known condition called “mommy guilt.” You’re never really free as a mom; you’re constantly thinking about your child, even when they’re not with you.
There’s also the unique experience of my son. I realized the other day that at four years old, my son worries about me. He’s incredibly empathetic and thoughtful, a definitely positive trait in my opinion, but he frequently asks “you not feeling well Mama?” I hate not always having the energy to keep up with him. It makes me feel sad. Then he holds my hand, puts a blanket over me, and stokes my hair while whispering “I love you, Mama.” He’s going to be an amazing person because of his CHD upbringing.
I’m forever grateful that I was able to have a child. I know many of my peers will struggle in their journey to parenthood, if they choose to become parents. It’s costly no matter how you go about it – I paid for my “natural” baby-making through my heart health, and others may pay through their wallets or the deep emotional tolls of failed adoption/surrogacy.
It’s because of our unique journey/experience as parents that I’m reinventing the term “Heart Mom” or “Heart Dad” – these titles are traditionally used to describe parents of children with CHD. ACHDers who are parents need to upgrade the term.
I’m a Heart Mom 2.0 – the new generation of “heart parents.”
The survivors who fought death and gave life.
The generation of parents with CHD – raising children who will know CHD in an entirely unique way.
I don’t want to demean the parents of CHDers’ journeys, because your journey is valid and unique as well – but we deserve a title within our CHD community to exemplify the spectrum of the congenital heart lifelong experience.
I think we can all agree that we hope to live long enough to hold many titles – Heart Spouse, Heart Mom/Dad 2.0, Heart Furry Mom/Dad, Heart Athlete, Heart CEO, Heart Hero – HEART AWESOME.
Here’s to all the Heart people out there – no matter what title you hold.
Christy Sillman was born with tetralogy of Fallot with pulmonary atresia. She is a wife, mother, writer, and the nurse coordinator at The Adult Congenital Heart Program at Stanford. Christy also co-coordinates a pilot ACHD support group through Mended Little Hearts called Surviving CHD. She is passionate about educating, advocating, and advancing the field of adult congenital heart care.
Copyright ©2014 ACHA
4 comment(s) so far...
By Tammy Wright on
2/21/2014 11:35 AM
Re: Heart Mom 2.0
This post is AWESOME. As an adult with Truncus Arteriosus and a mom to 3 heart healthy children I constantly struggle with guilt for their compassion towards me when I'm not feeling well and for not being able to keep up all the time. It's definitely the one thing I think about the most about making the choice to be a CHD mom and sometimes I wish I would have thought about it longer/harder when I was young. I'm so glad to know I'm not the only one out there that struggles with these feelings. I do know that I have some amazing kids because of my CHD. They are strong, sensitive and caring. Thank you again!
By Lisa Pons on
2/24/2014 9:08 AM
Re: Heart Mom 2.0
my son 17 was born with the identical CHD to you...but why do you think he struggles in school, has tics,adhd and personally issues. You are neuro typical. He has no genetic deletions or abnormalities and is well developed and strongand tall and good looking (again no abnormalities)
By Amanda Rose Adams on
2/24/2014 9:09 AM
Re: Heart Mom 2.0
I love this post! As a Heart Mom 1.0 I've met a few Heart Mom 2.0 models and some were much older than me. The sad thing is no one ever talked about being any kind of a heart mom when they were new mothers. For so long no one talked about CHD at all because there was no where to be heard. I'm so glad you spoke up, what you have to share is very important and needs to be heard.
By Christy on
2/24/2014 4:09 PM
Re: Heart Mom 2.0
Many CHD'ers struggle with developmental/educational issues. I struggled with dyslexia as a child. It could be from the lack of oxygen, the time spent on bypass, or any of the other interventions we encountered. I'll also add that my son has sensory processing disorder and he's heart healthy, he has no genetic abnormalities, and is a great kid, so what your son is dealing with may have nothing to do with his CHD. There is still a lot of research needed as to why some CHD'ers struggle with developmental delays/neurological disorders and others do not.
I'm so sorry you and your son have to struggle through CHD and ADHD/tics, bless both of you!