Baby with HLHS

[Guest]

An acquaintance of mine from another non-heart-related message board (known as CMA) has a little girl who has Hypoplastic Left Heart Syndrome. She had surgery recently and seems to be doing well.

This is not her first surgery (she had two not long after being born); she may have to have more, including a possible transplant. Doctors say she is doing amazingly well as, apparently, up until recently most babies born with this did not make it. She is a strong little girl who has a wonderful family that refused to give up on her!

They will soon move her out of ICU, if they haven't already. They had a rough time for awhile before she could have anything to drink; she kept asking for something even though they couldn't give her anything. Neither mom or dad had much sleep; it was really tough on them. Now she is able to have some fluids and she is much better! She's such a trooper. Her mom has helped to get her ready for this by using pictures of her from the last time she was in the hospital and letting her look at those pictures and pictures of her family...this seems to have really helped. They are all amazing people! Their faith is so strong!


Cort, "Mr MC" / "Mr Road Trip", 31swm/pig valve/pacemaker
'72,6,9/'81,7.hobbies.chdQB = http://www.chevyasylum.com/cort/
MC Guide = http://www.chevyasylum.com/mcspotter/main.html
"We got mountains to climb" ... Rod Stewart ... 'Broken Arrow'

 

[Harrybaby666]

Well you know Cort, That they are in my prayers.

Well you know Cort, That they are in my prayers.

Here's to the speedy recovery and good health for your friend's daughter. Harrybaby

 

[Mary]

Cort,

You are blessed to know such strong people. I will pray that she continues to make a good recovery.
Mary

 

[Emma]

Glad to hear the little girl is doing well after surgery. I'm assuming she has just had the third part of the fontan ops?
I know several people with children who have HLHS and it is a nasty CHD to say the least, but I know several children who are doing well now after all their surgeries for it if your friend would like to get in touch with them??

Hope her recovery continues really well - what a lovely family they sound!

Love Emma
xxx

 

[Yaps]

Poor little girl, hope she does well throughout..

 

[Guest]

I'm assuming she has just had the third part of the fontan ops?

Sadly, I don't know. I only found out about this within the last week when someone else posted to the message board about it. The person who posted sent me a PM with more details than the group since she noticed my signature and my note about my experience with open heart surgeries.

I know several people with children who have HLHS and it is a nasty CHD to say the least, but I know several children who are doing well now after all their surgeries for it if your friend would like to get in touch with them??

I'm not sure yet how open they are to reaching out to others. I PMd the person who PMd me back and indicated that I'd be more than willling to give them links to message boards (this one included, of course) for support, etc., but to date, I have not received a reply, I'm guessing because they've been too busy, understandably. The person who's daughter it is, apparently, has not posted directly to the group for a while...so, I don't really know....

Thanks all for the prayers .

 

[gijanet]

Ya know they have mine..........

Ya know they have mine..........

as I know all too well what they are going through.............sigh! Katie's last surgery should have been the fontan instead of the valve repair; so now we get to do the fontan and a valve re-repair or replacement........ugh!

Let me know if they do want some more HLHS support. Like Emma, I know several parents whose kids have HLHS. There are entire support groups devoted to HLHS - several on Yahoo............even tchin has an entire forum for it.

Please let us know how they're doing and if we can do anything. Hugs. Janet

 

[Guest]

Thanks, Janet.

So far, haven't seen any further news come across since I first posted ... a bit frustrating, but I'm operating on the premise that "no news is good news".....

As soon as I know more, I'll let ya'll know.

Thanks again.

 

[Debrinha GT]

What a sad story, but the wee girl IS alive and recovering! How old is she anyway? I'll definitely keep her in my thoughts and prayers.
Débora

 

[Guest]

How old is she anyway?

Sadly, I'm not even sure of that either . I know ... not a lot of information to go on, but not all message boards are as open with such information as we are here, ya know?

 

[Debrinha GT]

I know what you mean!

I know what you mean!

In my opinion VR is unique. Well, it doesn't really matter anyway. I just hope the wee lassy recovers soon! Have you considered showing her mum a copy of this thread to try and cheer her up a bit? Please, let us know as soon as your hear something from her.
Débora

 

[Guest]

In my opinion VR is unique.

From my experience, yes'n'no .

Have you considered showing her mum a copy of this thread to try and cheer her up a bit?

Yep ... but I don't want to overwhelm them, ya know? I figured I'd wait until we see another update, etc.

Please, let us know as soon as your hear something from her.

I will .

 

[Guest]

UPDATE!!!!

*grins*

CMA's "daughter is off the oxygen now and has done very, very well. A week has passed and she is now walking again, but is limited by the monitors. Her days are spent being poked, probed, prodded and monitored. For such a little thing (she's two), she has a sweet nature and good attitude. She has even started to sing again."

He and the family appreciate the thoughts/prayers, I'm sure .

 

[KristiinSD]

Great news!

Great news!

Glad to hear the little one is doing well. I agree that I am much happier its me in the waiting room than my son (or any other kids).

Kristi
MV
TEE next Tuesday
B-day next Wednesday
What a month...

 

[Debrinha GT]

How wonderful!!

How wonderful!!

So small and has already been through so much. The advantage in this case though is that once it's all over, she won't even remember a thing. You mentioned she might be needing a transplant in the future which I hope she won't, but if that is the case, I'll pray that things work out for her then. Anyway, I'm happy to hear that she's recovering and hope that her mum deicides to join this site one of these days.
Débora

 

[PapaHappyStar]

Cort,

Your friend may know of this support site for children with congenital heart disease -- in particular HLHS:

http://www.littlehearts.net

Burair

 

[Guest]

Yep, that is an advantage that she won't remember this time ... I know I didn't remember my first surgery (1977).

And Burair, thanks for that link. If the family is interested in websites/forums, I'll pass that along.

 

[Guest]

CMA posted today:

"We got to come home from the hospital today, and I sincerely thank everyone for the thoughts and prayers during my daughter's surgery and hospitalization.

She had a Fontan, the 3rd of 3 surgeries done to address Hypoplastic Left Heart Syndrome, which is what she has. Basically, the left (main) pumping chamber of her heart didn't develop...and so they make the right pumping chamber do all the work and modify the heart so that she has 2 chambers instead of 4. Longterm effects aren't known; the oldest person with this condition is now 22. Before the mid-eighties, there was no known operational procedure(s) to successfully address the condition. Estimates are she will need a transplant eventually.

They did a little extra work while they were in there on her left pulmonary artery that wasn't planned, and they had to put her back on the heart/lung machine after taking her off(while she was still in surgery) to fix an area that wasn't looking quite right. She also had to have a chemical pleurodesis (sp?) and had an additional drainage tube inserted to aleviate some air around her right lung following that procedure. So we have had a bit of additional anxiety the last few weeks.

She is doing well, we go back Friday for a followup visit."

 

[gijanet]

Good news.......

Good news.......

I am so glad to hear that they are home and finally doing well. Uh, how long were they in theater for that fontan??? Do I really want to know?

Keeping them in our prayers for good measure. Thanks for the update. Hugs. J.

CMA posted today:

"We got to come home from the hospital today, and I sincerely thank everyone for the thoughts and prayers during my daughter's surgery and hospitalization.

She had a Fontan, the 3rd of 3 surgeries done to address Hypoplastic Left Heart Syndrome, which is what she has. Basically, the left (main) pumping chamber of her heart didn't develop...and so they make the right pumping chamber do all the work and modify the heart so that she has 2 chambers instead of 4. Longterm effects aren't known; the oldest person with this condition is now 22. Before the mid-eighties, there was no known operational procedure(s) to successfully address the condition. Estimates are she will need a transplant eventually.

They did a little extra work while they were in there on her left pulmonary artery that wasn't planned, and they had to put her back on the heart/lung machine after taking her off(while she was still in surgery) to fix an area that wasn't looking quite right. She also had to have a chemical pleurodesis (sp?) and had an additional drainage tube inserted to aleviate some air around her right lung following that procedure. So we have had a bit of additional anxiety the last few weeks.

She is doing well, we go back Friday for a followup visit."

 

[Debrinha GT]

What a fighter!!

What a fighter!!

Thanks for the good news, Court. I was wondering how the little one was getting on. I hope her mum deicides to join VR eventually. I'll keep her in my thoughts and prayers and I'll also thank God for giving her another chance.
Débora