Facts and what Coleman is going through now and when he gets here

I decided to make a post devoted to some facts about CHDs (Congenital Heart Defects), HLHS more specifically. And make a post to answer some questions people ask me. This will help people know more about what is going to happen with delivery and what Coleman will be going through.

Some facts:

• Congenital heart defects are problems with the heart's structure that are present at birth.
• About 1 in 100 children born in the United States each year has a CHD.
• CHDs are the #1 birth defect worldwide
• CHDs are the #1 cause of birth defect related deaths worldwide
• Nearly twice as many children die from CHD each year as from all forms of childhood cancer combined
• Of every dollar the government spends on medical funding, only a fraction of a penny goes toward CHDs.
• Only about 50% of CHDs are diagnosed in the womb.
• People with CHDs face a life-long risk of health problems such as issues with growth and eating, developmental delays, difficulty with exercise, heart rhythm problems, heart failure, sudden cardiac arrest or stroke.
• HLHS is found in about 1 in 4,300 babies born each year in the U.S and accounts for 1% of CHDs
• HLHS is fatal within the first few days of life without surgerical intervention
• Surgery is not a cure for HLHS, just makes it livable.
• There are 3 seperate stages of surgeries for HLHS. Norwood procedure - birth. Glenn procedure- around 6 months. Fontan procedure - 18 months-4 years.

I found a good article that explains what HLHS is in an understable way...

Hypoplastic Left Heart Syndrome (HLHS)

A normal heart has 4 chambers; the upper two are called the right and left atrium and the bottom two are called the right and left ventricles.

There is a wall separating the atriums called the atrial septum and a wall separating the ventricles called ventricular septum.

Essentially, your right side of your heart pumps blood to your lungs and left side of your heart to your body; the blue signifies deoxygenated and the red oxygenated – blue for lungs, red for body.


Hypoplastic Left Heart Syndrome (HLHS) is one of 35 congenital heart defects and it is made up of a collection of problems that occur on the left side of the heart:

• The left ventricle is small and the Mitral and/or the Aortic valve may be narrow, blocked or have not formed at all.
• The Aorta is small and there is usually a hole in the atrial septum (known as atrial septum defect).

HLHS has many variants and a HLHS child may not present with all of the heart abnormalities

What this would mean in a baby born with HLHS is that the lungs are flooded with blood as the correct ‘path’ is not there and it follows the path the red blood takes after mixing in the Atriums. A sign in an undiagnosed baby is that they have trouble breathing as their respiratory rate increases and there is a blue tinge to their nail beds and lips.



All newborn babies are born with a duct that is open called the Ductus Arteriosus. It enables the blood to flow correctly around the body and it is only when this duct begins to close that the baby will become sicker. It is at this point that a heart problem is usually picked up but sadly for some, it is not.

There are 3 paths available to newly diagnosed parents of babies with HLHS. The first being to offer comfort care or to terminate a pregnancy, surgery or heart transplantation; comfort care is where the child is allowed to pass away peacefully without an medical intervention to sustain their life. This can happen at home or in the hospital. Heart transplantation is an option but is rarely offered as whilst it is very high risk and does not provide a cure, the availability of small, baby-sized hearts is very rare. Surgery can be performed to give a better quality of life and a more prolonged life. The surgical route is often a 3 stage procedure and each stage can be modified to the individual heart complexities. Whilst it is often a 3 stage procedure, it does not mean to say that there would be no further operations.

Stage one of surgery is called the Norwood procedure, stage two is called the Glenn procedure and stage three – the Fontan Procedure. Norwood is usually done in the first few days of life, the Glenn at approx. 3-6 months old and the Fontan at about 18 months to 4 years.

This is from http://www.charliejonesfoundation.org.uk/Hypoplastic_Left_Heart_Syndrome_HLHS



Some questions people ask me and some tid bits about what will happen:
Main question I get is if I have to have a c-section or schedule anything.
 - No, I hopefully will not have to have a c-section. They're treating this as a normal labor and delivery so that Coleman can grow as long as he needs to. I don't think they will let me go past my due date though.
Where will I deliver at?
- I will deliver at the hospital near us and Coleman will be transported to Egleston within a couple of days.
After birth, they will put lines in Coleman to start him on medicine to stabilize the heart until surgery, med called prostaglandin. So, he will be ok until surgery.
Hopefully I will not have to have a c-section to prolong my stay in the hospital so that I might be able to leave when he leaves.
They will do another echo on Coleman's heart before surgery to see exactly what they're dealing with.
Surgery will be about 6 hours long. He will then be in the cardiac intensive care unit (CICU). He will be sedated for the first few days so he won't be aggitated. His chest will be left open for the first few days also and baby needs to stay still to let that heal. The chest is left open to let swelling go down and let a couple of things heal quicker before they close it.
He will be in the CICU for the majority of the time at Egleston, constantly monitored.
The average stay for the surgery is 20 days.
He will be on a feeding tube and be sent home on a feeding tube.
HLHS babies get tired when eating because sucking makes them tired  (anything that works their heart extra makes them tired) and they don't eat enough, so that explains a little why about the feeding tube.
I will be able to pump and include that in his feeding tube food.
Feeding tube causes extra reflux.
Coleman will have a lower immune system than most babies and will need to stay healthy for his next surgery. We may limit going out much or a lot of people coming to visit for his health and safety.

I'm trying to think of anything else because I know there's more, but nothing is coming to mind right now. If anyone has any questions about anything at all, I'm at open book! I love talking about my baby and raising awareness for CHDs.
I hope everyone has enjoyed reading this :). I wanted people to have some understanding of what he has and what he will go through.