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The Road to Adulthood: A Mother’s View

May 9

Posted by: ACHA
5/9/2012 11:44 AM  RssIcon

by Stephie Goldfish

In January, I posted a blog about my friend Nicole, a young adult I recently met with a CHD diagnosis and story very similar to my own. When I spoke with Nicole for the blog post, I was also able to ask a few questions to her mother, Jane, about how Nicole will be transitioning into adult care.

To coincide with Mother’s Day on Sunday, presented below is an abridged version of the interview:

SG: What I’ve noticed, Jane, is that in knowing you and Nicole for only a short time, and only through ACHA, our blogs, and social media, that you are supporting your daughter 100% through many challenges and obstacles, and helping her in getting the appropriate care.

What has been the biggest issue that has come up for you in these past couple of years?

Jane: I guess the biggest issue for me personally is trying to come to terms with all this. As a mom it is very difficult to watch your daughter have such chronic, life-threatening illnesses. She is my only child. Another issue is all the time we spend in doctor's offices, getting lab work done and pulmonary rehab and trying to fit school work around it.

SG: Do you like the new adult congenital cardiologists/specialists that Nicole has been to see?

Jane: We are very lucky that the cardiologist locally is a pediatric/adult doctor. Her PH specialist in Gainesville will follow her as long as necessary because of her CHD.

SG: What surprised you most about finding someone whose illness is exactly like Nicole’s, and who is in her mid-40s?

Jane: I was told about you by a nurse at the local cardiologist office who read your blog on ACHA's website. I was simply amazed that you had the exact same thing and were diagnosed around the same age. I know a couple of other ladies with the same diagnosis, but you are the only one with so many similarities. You give me so much hope that Nicole can live into her 40s and beyond.

SG: When I was first diagnosed, the pediatric cardiologist heard my mom’s story about asking several doctors when my twin sister and I were born whether I had a heart problem, and they all said I was fine. But the pediatric cardiologist/specialist who first diagnosed me said they go with "Mother’s Instinct."

Do you agree that doctors should listen more to the mothers?

Jane: Absolutely! If some of Nicole's doctors had listened to me she may have been diagnosed earlier.

I would like to extend a special thanks to Nicole and her mother, Jane, for their interviews. Happy Mother’s Day to Jane and all the other mothers reading this blog!

Stephie Goldfish, aka Stephanie Hodgson, was born with a large ventricular septal defect, but it wasn't diagnosed until age 17. Since her defect went unrepaired, this resulted in Eisenmenger’s physiology, and she has developed severe secondary pulmonary hypertension. Stephie is an artist who graduated at the top of her class from The Art Institute of Pittsburgh; she is currently pursuing her love of writing, and writes short stories and poetry, as well as nonfiction. Learn more at her website and personal blog.

Location: Blogs Parent Separator ACHA Blog

2 comment(s) so far...


Re: The Road to Adulthood: A Mother’s View

Stephanie -
Thanks for helping us all to remember to thank our Moms (and dads). I am a 52 year old TOF patient - and I am struggling now with asking my mom for help AGAIN as I wrap my head around my next "upgrade" with a Melody Valve. I want to share my burden of decision with anyone but her - feeling that she has already put in so much time, love and tears to get us both to this place. But I can't think of anyone else who will understand and really help me through this like my mom will.
And yes - I am a mom too now!! And that is a miracle as well.


By Karen Matson on   5/9/2012 1:53 PM

Re: The Road to Adulthood: A Mother’s View

I am a new mom, my son is 7 mo old and I am now facing the need to have a Melody Valve before I can have anymore children. I was diagnosed with TOF as an infant and didn't have surgery until I was 2 1/2. My mom doesn't think that I need another surgery, so I struggle to keep her informed and educated because she insists that there is nothing wrong with me.

By Melissa Wisniewski on   5/15/2012 3:06 PM

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