A Positive Look to the Future

Many of us heart parents are living each day with the "unknown." It's as though after the Fontan, it's all uncharted territory we are faced with, being that this whole procedure IS quite young. When explaining Jack's prognosis to people I usually finish with "The oldest person with this heart condition that has had the same surgeries as Jack is about 30... so we don't know a whole lot past that."

But most of us only hear about the babies. The most crucial time of their lives are those first years to get through the three stages and come out the other side able to sustain themselves. Then, and for good reason- we don't hear too much about them. Because they are living NORMAL lives and there aren't as many stories to report or updates to keep.... which is GOOD... we all know that when things go quiet online from heart families it usually means life is too normal to focus on CHD's and their constant quirks.

I received an email from a very generous and compassionate young man, who is 23 with Hypoplastic Left Heart Syndrome. He came across my blog and identified enough with me that he KNEW I would appreciate a note from him telling me that he is doing GREAT and has been since his Norwood Procedure. I asked him if I might share his email on my blog to spread the comfort he gave me, with other heart families out there, and he sweetly complied:


My name is Andrew, and I found your blog, hlhsbabies and I wanted to just sent you a quick note. I'm 23, and I was born with HLHS. I'm doing amazingly well too! I had the Norwood, Glenn, and a Fontan. Dr. Norwood actually did my surgeries back in the late 80s/early 90s. 

I occasionally checkout the blogosphere for people talking about HLHS and sometimes reach out to families who may have younger children who are in my position. I just want to spread some good news, and give families like mine hope- because I know for my parents there wasn't much. 

I want to let people know that there is a future for children who were born with HLHS. For example, I'm almost done with university, I have a great job lined up, I exercise regularly, etc. I'm just about as normal as can be. While it might be a pain in the neck sometimes to need to check in with a few doctors once or twice a year- it's not that bad really. 

So, let your kid know that he's not that different- and he can do whatever he wants. HLHS is something he'll have for the rest of his life- but he doesn't need to give up his life because of it.


I don't know about the rest of you, but when I hear from the older HLHS's kids/adults I am so comforted to know that Jack DOES have a future ahead of him and I can sleep well knowing there are many others out there coping with the same thing. Thank you Andrew, we WILL be keeping in touch!


Allison said…
YAY! I am with you in that I LOVE to hear from adult CHD'ers! Thank you for sharing your story Andrew and continue to keep in touch ok?!
Kirsten said…
I'm so glad I came across your blog! My little baby bump has just been diagnosed with HLHS & the internet searches for information can be so depressing! First Jack gave me so much hope talking about soccer & Kung Fu & then to have a 23 year old share his life and how it is normal gives me SOOOO much peace and hope! THANK YOU!!
Aimee Hardy said…
I'm so glad you shared that Lisa. It's just what I needed to read tonight. Andrew may just be my new hero, even if he wrote to you not me :) Awesome.
Anonymous said…
Thanks for sharing your story..
My baby girl just born today dignosed with HLHS & we as parents were so so worried about our baby's conditioned..
Drs say she'll need to have a surgery to get her blood flow from her heart to her lungs & currently being stabilized..
She's doing great so far..

Reading this blog lessen my worries of our baby's future..
Prayers to all the sufferers in this world..

Congratulations on your baby girl. Truly it is a bittersweet thing- but babies born even just now with this defect or luckier than the ones before them. They've been developing and improving treatment for HLHS more and more. I hope this blog can help and comfort you and your family through this journey.
Julie Lindsay said…
My grandson was born in April and had his 1st surgery at 5 days of age. He has done amazingly well but now we wait....It's very difficult to just sit and wait for signs that his heart is starting to fail to alert us it's time for the second surgery. Its hard to think that anything is even wrong with him because he looks and acts so normal. Andrew's story inspires me and reminds me that he will be able to lead a normal and enriching life. Thank you Andrew.
Nikki Moore said…
That's so great to hear. I knew from 19weeks pregnant that my little peanut had HLHS .. She had to have a hybrid procedure because she was so small at birth but she just had her Norwood two days ago and is doing fantastic! I can't wait until she comes home and can just be a baby :) this gave me so much hope thank u so much !

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