Q & A's

When explaining Jack's condition to people who find out or ask about it, I've sort of developed a script. It's so mechanical and rehearsed it almost comes out on cruise control. It usually starts with "He has hypoplastic left heart syndrome" and that alone, leaves people dumbfounded. I skip over the actual meaning of "hypoplastic" and immediately proceed to lamen's terms, "he has half a heart."

If people are actually interested in the details, they will ask which half- which leads me down the road less traveled, using big words like "aortic and mitral valve stenosis" to which some people actually are familiar with. I usually let out a sigh of relief in this case, because I know they really understand the gravity of the situation and I feel more connected to the conversation.

Unlike my other speech, which goes "His left ventricle didn't develop, so he had to have a few heart surgeries to re-plumb the one good side he DOES have." Typically, the next question is "Is he OK now?"

I have a heard time with that one, I feel like saying "UM, NO, he has a two-chambered heart with a bunch of gortex stuck around it and I go into his room every night to make sure he is still breathing after he falls asleep..."

But instead, I say "Well, for now... yes he is OK."

Then, the question that will probably haunt me for as long as I live comes next:

"So will he eventually have to have a transplant?"

Suddenly I'm taken out of my body and put into scrubs and I feel like a cardio thoracic surgeon sitting across from a very nervous set of parents asking if their heart baby will need a heart transplant. The truth is I don't know, I certainly HOPE not... but I suppose it is always a possibility. It never was on my list, heart mom's know the list.. "Deliver baby, Norwood, Glenn, Fontan, BREATH AGAIN." Transplant wasn't ever an expectation. But every time I get that question I am flung into reality with the fact that it could happen.

Something I hold onto was when Dr. Hawkins told me that the one side of the heart that Jack does have is a really good one; strong and healthy. I hold onto that with everything I've got and when I feel the heart beat through his broken chest I believe him, because I can feel it. But if I leave my hand there too long and feel the beat of his repaired heart I can easily become fearful.

How do you other heart mom's answer these questions? I know it's a part of your life, just like it is mine. We've become very good at delivering the stories that our little heroes have created. I'm interested in how you all feel about them.

Comments

The Popes said…
Man. It is so hard! I say the same, "He only has half of his heart" line. I usually leave it with something about open heart surgeries where the dr.'s rerouted the blood so that he could live.

What's hard for me is that Gabriel looks so healthy that people assume he's totally fine. I don't want him treated differently, but he does need special consideration for certain things.

Gabe isn't a candidate for the 3rd surgery right now. His pressures are too low. I'm constantly worried about what a transplant would mean for our family. It's a scary thing. But he is HEALTHY and doing great now so I try to focus on that!
Wright Family said…
I pretty much explain the same way you do as well, but then I have to explain what Plastic Bronchitis is and how she has hard fibrous material that casts the insides of her lungs, and suffocates her from the inside. We have been awaiting a heart transplant in Seattle since the end of November. But I have faith it will all work out :) I wish the Fontan would have been more successful for Carla (she seemed so well afterwards if you remember...) But 2 months after we got home the coughing up phlegm all night began. It's been a long journey, we look forward to that new perfect heart. When or if Jack ever gets there it will be because the doctors have exhausted every other avenue, and, it will provide a life line and will therefore be less horrifying of a thought. I guess anyway. Take care and know that your family is always in our prayers. Jack is such an amazing little boy :)

Jen Wright
brande20 said…
As I was looking up things on HLHS, I came across your blog. I only read a couple of entries. My sister was born in '87 with HLHS. At that time, medicine wasn't developed enough to save lives of those born with as you say, half a heart. In fact, only 1% of babies born at that time survived. My sister was in the other 99%. She was only 2 days old. I think often about what her life would be like. I know it wouldn't be anything like your son's. Even if she were to have survived the first surgery (only 20% chance), they really had no idea how long her life would be. If she were to survive, then there was only a 40% chance she would have survived the first 2 weeks of her life. It was after that when it become unpredictable. Due to the lack of oxygen they said she could have brain failure. She would probably never be able to be a "kid", running, climbing, doing what a typical child would do.

It's amazing how far medicine has come! It warms my heart to see that babies survive this every day now. I saw where you found out at 20 weeks that your son had HLHS. In '87 it wasn't detected until birth.

I will continue to follow your journey.
Henry the Blog said…
Great blog and great maternal attitude! I wanted to encourage HLHS parents to serve as book reviewers for our new memoir! Henry: A Hypoplastic, Congentially Defective, Transplated Tale @ Amazon. Thank you and keep sharing your story!

Thanks, Erin Taylor @
www.MalleyandHenryFund.org
Kendra said…
I answer the same way. I'm so glad that I'm not the only one. My son has had 2 of the 3 surgeries and like one other lady that replied to your comment my sons name is Gabriel and also looks healthy. He is the best gift that god has giving me. I don't know what the future holds..so I don't take one thing for granted. So glad I found this blog
Anonymous said…
Hiii all the way from Puerto rico my name is juliana and i have a 1 year old baby boy called zahir he has HLHS and has had 2 surgerys. Im glad ive found this blog so i can feel and share same experiences. I usually answer the same questions you do. If you want to see my hole process see my video in youtube its called " una vida con medio corazon" its in spanish i hope you understand spanish cause im from puerto rico. Or look in youtube " baby saky" video. This process is really hard after all ive been through. All you have is hope and faith that nothing never goes wrong day by day. My baby changed my life the way i looked at. Life. U only live ones. I hope u liked my videos. Heres my blog saky's story.blogspot.com he's my miracle. I hope everything goes well with your baby God Bless. Xoxo
Candice said…
Hi. My name is Candice, I'm from Sherman Texas and my nephew has HLHS. I so wish that I could say that he is doing okay but the Drs messed up and they sent him home to pass away after the first surgery on March of 2012. As of today, August 28, 2012, they are refusing to do the 2nd surgery because he is brain dead. What I'm needing from ya'll is a little information about how the surgery and everything after went. When asking for the records of what happened, they refused to release them anyone. They typed a summary of what happened and left out all drugs that were given at the time of surgery and afterwards when he was monitered. I'm asking for advice and information on what happened and if any of your experiences could shed some light on what went wrong. Please contact me at cartercandice23@yahoo.com
Lindsey B. said…
It's so wonderful to know I'm not the only one who uses the "half a heart" terminology! People truly have no idea just how complicated and serious HLHS is. I'm so glad I came across this website! My daughter has gotten through the first of the three surgeries and we are thankful for every single day we have her!
Thi Lan said…
wow so hard and the baby is so cute >.< your blog is very good and itneresting. im glad if you visit my blog, too <3 keep in touch!

xx
beauthi.blogspot.com
hkwdlaw said…
Your blog is truly terriffic. I feel as if you took the thoughts right out of my head. My son, almost two months was born with hrhs. He has had a shunt placed and will require the Glenn and fontan in the future.

Thank you!
Sander said…
Over here in Europe (The Netherlands to be precize) it is the same thing. I sometimes get surprised when somebody actually asks questions that make sense and they seem to understand the situation. My son has had the first 2 operations in his first 10 weeks (Sept-Nov '12) we are now waiting for nr 3 (probably this summer) and some people seem to forget about it. On the one side that is good, because we want him to grow up as normal as possible, but on the other side the 3rd operation is coming and not a day goes by when I don't think about what still lies ahead of us...of him. Somehow you feel aknowledged when people do ask you what will be happening and how things are going.
When we first got the diagnosis we got really depressed about his chances when we started our search on the internet. But now I know almost everything there is to know medically and I see him develop and enjoy the live of a toddler I use Google differently, not just to find I what can go wrong, but more what goes right. Reading about your son and about a 23 year old man who is fully alive it gives me hope for the future. Thank you for sharing!
Anonymous said…
Our little Theo, born June 4 - june 16th, lived only 12 days, and our hearts are broken… Reading these blogs has compelled me to write if for no other reason than I love to see his name in print. I don't want anyone to forget he was here, he was loved so very much and still is… forever. Sometimes I really can't cope with the loss of Theo. I am grandma and it pains me to the enth degree to see my daughter and son-in-law in pain, I wish I could take it from them, I wish for so many things the list is unending but mostly I wish I could wake up and this nightmare would be over...
Anonymous said…
My nephew passed away yesterday after complications from the first surgery. He was almost four months old, and sadly, the only life he knew for his entire life was the one in an ICU unit with a tube down his throat. It breaks my heart to think that all that suffering was for nothing so I was happy to see your little boy doing well. I too hope that he will never need a heart transplant. Good luck on your journey.

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