Author Topic: Hypoplastic Left Heart  (Read 5128 times)

Offline purple petunia

  • Learning
  • Posts: 21
Hypoplastic Left Heart
« on: April 19, 2009, 03:00:18 PM »
On Jan. 24, 2009 our third sweet child arrived, Jadrian Gunnar. We had a home birth, everything seemed great until the 4th day when we started noticing that baby dear didnt want to eat, was getting blue and having breathing difficulty. We took him to the ER which ended up being  a nightmare. Dr was very unattentive and they were not set up to handle an infant but I wont go into all that. Baby's oxegyn and glucose levels were both down to 8!! (Normal being 100). God miracoulsly kept our son alive and we were transfered to a large hospital  where he was diagnosed with Hypoplastic Left Heart Syndrome. Its a rare, very serious heart defect. One of the hearts four chambers, the one that pumps blood to the body, did not develop. Leaving the one that usually pumps to the lungs to do all the work. In unborn babies the lung artery has a bypass that allows the blood to go to the body, in the first few days after birth this closes which is why baby started having problems.
This is one of the worst heart diseases. Twenty years ago all babies born with this were left to die because they had not discovered a procedure to sucsessfully make a single ventricle heart do everything. Now they do a 3 step open heart surgery. The first, called the Norwood is done soon after birth, the 2nd called the Glenn at 6-12 month and the last, called the Fontan around 3-5 years old.  Because the risks of surgery are very high and even with surgery its still not a complete fix, they are required to give parents the option of taking baby home to love until it dies or trying surgery. What a heart rending desision to make!
We did go ahead with surgery which he had at 2 wks old. We spent 61 days in hospitals and are now home with baby dear for 3 weeks. Our biggest issue now is getting him to gain weight.
All this said.....I'm wondering if theres any of you out there that would happen to be familiar with this heart defect or possibly have a child with it. I would dearly love to hear from others...and any tips on building up your infants immune system that has been months on antibiodics and all kinds of meds. I am pumping and giving him my breastmilk by bottle as he dosent have the strength to take the volume he needs by breast.

Offline wyomama3

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  • Posts: 557
Re: Hypoplastic Left Heart
« Reply #1 on: April 19, 2009, 04:37:38 PM »
My family has a wealth of experience with HLHS.  My sister's first baby was born with it.  Hers was late term, the heart forming it's abnormality not in the early weeks of pregnancy, but late after 20 weeks.  They chose to go the transplant route, she was 4 months when she received her new heart, a month from today will mark the 6 year anniversary.  She is a healthy, happy 6 year old.  My sister also had custody of a little baby (mother abandoned him in the hospital, sis has foster license) who had HLHS.  He passed away at 9 weeks of age, just a few days before Christmas 2005. 
The reason transplant was chosen is that they live high altitude and the Norwood, etc procedure did not have as high success rate.  One of the nations leading pediatric cardiologists was practicing at that hospital.  He is no longer there, and the hospital now pushes the alternative procedures. 
I will PM you with some info on how to connect with them and share experiences.  :)

Offline shaylapolanchek

  • Wide Eyed
  • Posts: 1
Re: Hypoplastic Left Heart
« Reply #2 on: May 03, 2009, 03:39:19 PM »
I do not have any personal experience with HLHS, but I have met many many many families through carepages with children with it. God has put it very heavy on my heart to pray for these children & I want you to know that I am now also going to pray for your child. Are you a part of the Carepage family yet? If not, I highly encourage you to consider it. It has been such a great support for so many. I would be more than happy to direct you to some of the carepage families that are experiencing the same thing as you, and many that have gone through all 3 surgeries and have very encouraging stories to tell. Just let me know if you would like me to send you some of the links. God bless you on this journey!

Heart Hugs! ~Shayla ( :-*