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Author Topic: My unborn son has Hypoplastic Left Heart Syndrome  (Read 1701 times)
J.J.
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« on: November 06, 2006, 10:34:29 AM »

I know most of y'all don't know me. I have been more of a lurker than a poster...  I am just needing to organize my self and prepare myself to tell the family and friends about what is going on so thats the main purpose of my post.   Another reason I am posting is because I posted about promotional baby items last night and then got the bad news today about my son... 

The hardest part of this news is I was not able to be with my wife to support her.  I am still in college and I had a test get rescheduled for today.  (when we made the appointment with the specialist the test was scheduled for Wednesday of last week.)  The a*.. hole professor wouldn't let me reschedule the exam.  So it was fail the class or attend the Dr. appointment with my wife. 


  Kenneth (my yet to be born son) has Hypoplastic Left Heart Syndrome.  More about the exact specs of the syndrome to come later.
  The cardiologist said that he'll be getting a major heart surgery in the week following birth, and to expect him to have to stay in the NICU for about a month after that. He will be blue following this first surgery, until the second surgery.
 
 He will need a second major surgery within a year, and a third before he's 3. The success rate is fairly good now, but if for some reason the surgeries don't take, he will be put on the heart transplant list.

  Apparently, even 15 years ago, most babies with this heart defect died. They've improved surgical techniques enough now that he has a fighting chance.
 ____

Hypoplastic Left Heart Syndrome  (HLHS) is one of the most complex cardiac defects seen in the newborn and remains probably the most challenging to manage of all congenital heart defects

HLHS is a condition in which the left side of the heart is underdeveloped.  Usually, the left ventricle, the left atrium, the mitral valve and the aorta are affected.  It is called a syndrome because it can encompass several different variations and varying degrees of development of these parts of the heart.

To understand HLHS, it is helpful to understand how a normal baby's heart works.  The heart is comprised of four chambers: the upper chambers are called the left and right atria, and the lower chambers are called the left and right ventricles. 

Very simply, in a healthy heart blood flows from the right atrium to the right ventricle where it is then pumped through the pulmonary artery to the lungs to be oxygenated.  Blood then flows back to the heart via the left atrium to the left ventricle, which pumps this oxygenated blood through the aorta out to the body.  This is how the body's organs and tissue receive oxygen, which is vital.  When a baby has HLHS, the left side of the heart is underdeveloped so it cannot sufficiently pump the oxygenated blood out to the body.

Babies with HLHS do not have problems while in the womb - it is only after birth that the heart fails to work properly.  This is because all babies receive oxygen from the placenta while in the womb, so blood does not need to go to the lungs.  In addition, there is an opening between the pulmonary artery and the aorta, called the patent ductus arteriosus (PDA) that is present in all babies.  It allows the blood to go from the right ventricle out to the body, bypassing the left side of the heart. 

The PDA usually closes a few days after birth, separating the left and right sides of the heart.  It is at this time that babies with undetected HLHS will exhibit problems as they experience a lack of blood flow to the body.  They may look blue, have trouble eating, and breathe rapidly.  If left untreated, this heart defect is fatal - usually within the first few days or weeks of life. 

Once HLHS has been diagnosed, a drug called prostaglandin is given to keep the PDA open until surgery is performed.  There are two surgical options for treating HLHS:  a Heart Transplant or the 3-Stage Surgical Procedure, the first stage of which is called the Norwood procedure

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wingnutx
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« Reply #1 on: November 06, 2006, 10:42:28 AM »

I'm sorry to hear that. Best of luck to you and yours.
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cosine
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« Reply #2 on: November 06, 2006, 11:05:22 AM »

Exactly what wingnutx said.

If it's your thing, and you don't mind, I'll say a prayer (or two) for your son and your family.
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Andy
J.J.
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« Reply #3 on: November 06, 2006, 11:21:57 AM »

Prayers are good. Heck one of the first people I am going to e-mail is my aunt who is a Nun... I figure her prayers have a better chance of being heard than mine...
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El Tejon
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« Reply #4 on: November 06, 2006, 11:31:17 AM »

They are doing some truly amazing things in pre-natal surgery now.

My oldest nephew was born very premature (and was operated upon before birth [not as extensively]).  He is now a very fit and happy 8 year old who is shooting guns and is in Cub Scouts, Judo, and a first class firewood carrier. grin

It will be rough.  My brother did not eat for a week.  Get exercise and have someone to talk to.

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« Reply #5 on: November 06, 2006, 11:34:54 AM »

Best of luck and prayers to you.
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AmbulanceDriver
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« Reply #6 on: November 06, 2006, 11:41:03 AM »

JJ, my prayers are with you.  As others have said, the advances in surgery, especially pediatric surgery, are absolutely amazing.  That still can't take away the feeling that you've been shot in the gut.  I'm not a parent, but to a degree I can imagine what it must be like (I've done a lot of work with neo-natal teams through AMR, so I've seen some of what parents go through).

As I said, my prayers will be with you and your family and your unborn child. 
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Nightfall
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« Reply #7 on: November 06, 2006, 12:38:29 PM »

I've no prayers to offer, but I will sincerely hope with all my being that your son comes out of this well, and spends a happy youth begging dad for guns and ammo.
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grampster
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« Reply #8 on: November 06, 2006, 12:56:00 PM »

Your family will be in my daily prayers.
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J.J.
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« Reply #9 on: November 06, 2006, 01:22:28 PM »

I've no prayers to offer, but I will sincerely hope with all my being that your son comes out of this well, and spends a happy youth begging dad for guns and ammo.

I am really ashamed to admit it but that made me smile.  That didn't occur to me, I can't wait for that day.  Your comment made me remember the first time my Dad took me out to shoot, it was an old single shot shotgun,  I can't wait to make memories like that.
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Lee
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« Reply #10 on: November 06, 2006, 01:26:26 PM »

I wish your son the best.  The son of a freind of mine had the same surgery two years ago and is doing great.  Keep the faith!
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Antibubba
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« Reply #11 on: November 06, 2006, 04:22:56 PM »

I'm sure your son will get the finest treatment available. 
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« Reply #12 on: November 06, 2006, 04:48:45 PM »

Here's to that beautiful day in the future when you know you son is well. Cheers! Shoot well!
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AJ Dual
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« Reply #13 on: November 07, 2006, 04:41:11 AM »

Praying for you.

Our friends baby is going to be born in about two weeks with her liver and intestines outside her body. The doc's also think she's got a fighting chance, but it may be two years before she comes home from the hospital.

Something being wrong was always our biggest fear in our back-to-back twin pregnancies, so maybe everyone who's ever been a parent knows about 1% of what you're feeling.

Hang in there, and keep us posted as you can.
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Stickjockey
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« Reply #14 on: November 07, 2006, 07:29:15 AM »

Quote
Get exercise and have someone to talk to.

If nothing else, remember that we're here for ya'.

Prayers and best wishes!

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dasmi
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« Reply #15 on: November 07, 2006, 05:52:30 PM »

Prayers for you and your boy on the way. 
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tokugawa
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« Reply #16 on: November 08, 2006, 01:38:08 PM »

Good luck and God bless you and your family.
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J.J.
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« Reply #17 on: November 08, 2006, 01:52:33 PM »

Thank you for everyones kind words (and prayers for those who are inclined).   The support that has come in is amazing.  Right now we are learning everything we can about this syndrome.  In the last 15 years many major break throughs have occurred.  This is now a survivable disorder.  It will not be easy but we will make it through this hard time.  As of right now we are waiting,  come March when our baby is born is when we will learn more and start to experience the real stress.  Lindsey (my wife) has a few more appointments with the cardiologists to make sure that everything else is developing correctly.  As we learn more we will keep everyone updated. 

The biggest help was finding an online support group and hearing of others experiences.
Also, today when telling my bosses about whats going on, and seeing if I could move up w/out a college degree (it is Wal-Mart after all), I learned of another employee who has a daughter with this same exact problem.  Finding proof that I am not alone (I knew I wasn't alone but being able to talk to another DAD about my fears) was more of a relief than I can put into words.

Here is to hoping that everything will work out at my job and my bosses feel that I am "qualified" enough and "far enough in my training" that I am able to be moved up without finishing school.  Friday will be when I learn of my Bosses decisions.
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