5/10/2012 12:53 PM
By Alissa Butterfass
In honor of Mother’s Day, I interviewed my mother Nora Wiznitzer Stonehill about being a parent of a child with a CHD. Below are condensed and edited highlights of the conversation. Note: I am not a professional transcriber so I hope this captures my mother’s intent, if not her actual words. Many thanks to my mom for her honesty and candor during our conversation.
Learning her baby was born with a heart defect:
On the day after you were born they came to tell me that you were very purple, very dark, very blue and that sometimes happened and they were going to put you in an incubator and hopefully it would clear up. By later that day it was very apparent that wasn’t going to happen. They said chances were you were what they called a “blue baby” and they had to check it out and figure out what it was and that could only be determined by a cardiac catheterization.
Getting information about TGV:
I was 26 years old. I had not a clue of what congenital heart disease or a congenital heart defect was. I was totally in the dark.
The doctors and nurses were helpful; they drew pictures. I went right away and got out any books I could get and for the longest time any time they explained it, I thought you had tetralogy of Fallot. Eventually I understood what TGV was. I also learned a lot sitting in the hospital in Boston where you had your Mustard surgery at age two.
People now have a great advantage because they can go online, they can research. They can check up on doctors. We had to rely on our doctor for the referrals. Now there’s more known about TGV.
Raising a child with CHD:
The cardiologist said the problem with patients with congenital heart defects is not necessarily the physical. It can become psychological and it was very important not to make you a psychological cripple. And so we decided to treat you normally. We had you ride a bike. We took you skiing. And I think that was very helpful. To some extent we normalized so much that we let some years go by between the annual appointments.
Recalling a particular happy moment:
After being in Boston for nearly a month for the Mustard surgery when you were two, when you and I got home, we waited for your older your brother to get off the bus from school. And you said “Look David, no more blue. Pink.” And then you did a somersault on the grass and that was really amazing… amazing.
Being a parent of an adult with CHD:
Now I still feel like I want to be partially responsible. I know you have to be responsible for your own medical care but I still want to know what’s going on. As a parent you never get rid of the fear of the medical problem. You may have less control but as a mother you always worry. I still want to protect you.
Watching your child with CHD have children of her own:
It’s a miracle… It’s a dream.
Advice to other parents:
- As a parent when you first hear about this, you may feel guilt that you contributed to this. And then you realize these things happen, and you should know you didn’t contribute to it in any way.
- I was worried we wouldn’t bond when I couldn’t hold you for weeks but it’s your child, it makes no difference. This child comes home with you, it could be a week a month or even three months, it’s your child.
- Try to treat you child as normally as possible, within the framework of what he can do.
- As a parent you do always have to be vigilant and stay on top of medical care.
- Just love your child. That’s the most important thing you can do.
Please also read my tribute to my mother from last summer: A Shout Out to all The Moms, Especially Mine.
Alissa Butterfass was born with transposition of the great vessel, which was corrected with a Mustard procedure at age 2. In addition to being a mom, wife, daughter, sister, friend, wannabe author and chocoholic, she works part time as a senior marketing manager at a Fortune 500 company and volunteers as the Co-President of her local chapter of a nonprofit organization.
1 comment(s) so far...
By Debra Etelson on
7/24/2012 7:51 AM
Re: A Conversation With Mom
Thank you for sharing this Alissa. As a pediatrician and mom to 3 children with chronic health conditions including Type ! diabetes and celiac disease, I understand what it's like to worry, and love, and encourage and advocate, and worry some more...and just do your best on a daily basis. Your mom did a great job raising you to be the successful, caring, and giving person you are today. Both of you are an inspiration to me!