Allison

Allison's Journey with H.L.H.S.
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H.L.H.S is a Heart defect. It is where the left side of the heart does not develope. Left untreated, there is zero chance of survival. There is a 3 stage operation in which the right side of the heart is rebuilt to work as both sides.
Hypoplastic Left Heart Syndrome (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. 
Allison's Story




Hi my name is Allison Monroe Patton. My story starts at 20 weeks gestation when mommy and daddy went to see if I was a boy or girl at the ob/gyn's office. They found out I was a girl!! But the technician just couldn't see everything with my tiny little heart. So Dr. Lo said I would like you to see a specialist next week just to see if we are wrong. That day the doctors office called mommy to tell her who she was seeing and when. They wanted her to go three days later on Monday. This immediately told mommy something was seriously wrong if they were able to get her in that fast. So on April 21st, 2005, 15 minutes after arriving she was being told that her baby girl has HLHS one of the most severe CHD's. Mommy and daddy had no clue what any of that meant. They had never heard CHD let alone HLHS. This was all foreign to them. When they were told that their best option was to terminate the pregnancy within the week they were heart broken. Not long after hearing this news they searched the internet for hours and hours trying to find out about HLHS and everything on it and possible treatments. As it got closer to my birth date they planned a day for mommy to come in and be induced since we lived about an hour away from Riley Hopital for Children. That's where I would have all my care after I was delivered. I came into this big world on August 16th at 10:47 p.m. weighing 8 pounds 2.5 ounces and 20 inches long!!! I was a BIG heart baby. But not as big as Chloe!!. So I was handed off to an infant cardiac team from Riley and IU and whisked away before mommy could even get a glimpse of me to a room they call the Island. They cleaned me up, stabilized me, and put me in an incubator connected to a heart monitor. The doctors did this in about 2 hours and then I got to see mommy. Not for long. Then I went to Riley's NICU module 1.

I had my first cath at 2 days old and then at 6 days old I had my first open heart surgery called the Norwood. I stayed in the hospital for 5 weeks. I contracted e-coli and had to stay long enough for all 4 weeks of medicine for it. I had a slow good recovery.

A few months later I had to have a heart cath to balloon open my aorta. I also have a coarctation of the aorta. I had the same surgery again in February and that's when the doctor decided to schedule the next open heart surgery called the Hemi-Fontan.

I had my Hemi-Fontan on May 9th, 2006 at 9 months old. I had a very hard and long recovery that scared my family. But I eventually came home after 4 weeks with PICC line for another infection I got with that surgery too.

Then I had my 4th heart cath in February 2007 and my cardiologist decided it was time to schedule my completion of the 3 surgeries called the Fontan. I had my Fontan April 4th, 2007. I had a fast and speedy recovery lasting 18  days. My best recovery yet.

I had another Angioplasty for my left pulmonary artery on August 17th, 2007 to open it up better. The day after my 2nd Birthday!

I am now 3 years old. I haven't had to have any surgeries for over a year now. Whoo! Whoo!

I was excepted in the Make a Wish program. I'm thinking of going to Disney World! I AM A PRINCESS!!!!

Well....now it's May 2009     I have to have ANOTHER Angioplasty. This time they are thinking of putting in a Stent. I'm sure all of you are thinking I have been thru alot in my 3 1/2 years. I have! If you are thinking.....why don't they just do a Heart Transplant? Well....I will eventually need one. But, it is best to keep doing what the Dr's can do to the heart I was born with. The longer they can put it off the better. It is hard to find a heart for children. And.....new hearts don't last forever. There's always a possibity of rejection. Those Dr's....those wonderful Dr's at Riley Childrens Hospital...they know what they're doing.

So....again....my Mommy and Daddy...and all of MY Family are putting their faith in Gods hands, and the Dr's hands. Thank you for visiting my Nana's Website and checking on me. I'll try to update you soon!      Allison



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