Tuesday, May 19, 2009

A Little More Information

I talked to Dr. Chandrakant Patel yesterday (the cardiologist that performed the echo) and he indicated that he didn't think Hope would be a candidate for the prenatal surgeries that I found online. I am going to paste the information on the surgeries, but I really don't understand much of them:

In a small subset of fetuses in which the hole between the atria is closed, a new procedure that opens the hole before the baby is born has been developed. This new procedure is known as fetal balloon atrial septostomy.

There is another subset of children who develop a problem with the aortic valve that then leads to enlargement of the left ventricle. The left ventricle then shrinks causing hypoplastic left heart syndrome. One proposed surgical stratey is to open the aortic valve before the left ventricle shrinks.

From what Dr. Patel indicated, Hope's left ventricle has already shrunk, so she is not a candidate for the procedure. He also told me the following:

1. The left ventricle is VERY tiny
2. He was not able to find an aortic valve
3. He was not able to find an ascending aorta
4. There is no blood flow going through the left aortic valve
5. Without two functioning kidneys, the surgeries will be very difficult for her to recover from and may cause her other kidney to fail

We have an appointment with Dr. Philip Smith (Cardiothoracic Surgeon) tomorrow to determine whether or not Hope would be able to have any of the surgeries based on all of the heart and kidney problems found through the ultrasound and echocardiogram.

Based on the information we have now, it looks like we will be carrying Hope (as long as she survives inside of me) until the end of July or early August. I am hoping they will be able to induce me a little early...with Jerry starting school and not having anyone here to watch Jerry and Paul...we think this would be the best time for her to be born. We will request no surgical intervention and let God decide when to take her to heaven. This will give me the piece of mind knowing that she really is mine and we will be able to have a proper memorial and funeral for her.

It breaks my heart writing this and I am hoping that we will get better news from Dr. Smith tomorrow or from Dr. Patel next week (I wanted another echo, just to make sure nothing has changed...or hopefully things have changed for the better).

I will update with the results of the meeting tomorrow. I am hoping we get good news, but based on the echocardiogram we have...it doesn't look very good. Hopefully Dr. Smith will be more encouraging.

Another excerpt from a beautiful poem I read:

A heart mom is always a heart mom.
Now wise beyond her years.
For those who have angels in heaven,
Our hearts share in all of your tears.

Every day I will try and remember,
I was chosen for her (and no other).
I will always embrace that beautiful day…….
When I became a “Heart Mother”.

Everything that we have gone through is unimaginable for anyone that has not been where we are. I am hoping no one will judge us for the decisions that we make. We are making our decisions based on the best information that we have available. We are slowly accepting that our little girl is very sick and we do not want her to suffer at all. I think most parents want the best life for their children. When your world comes crashing down from a diagnosis that you cannot change, you question everything you once knew...about yourself, your life, your God, and the people around you. It is something I don't want anyone to ever go through. I hope that one day there is a cure for HLHS and when a diagnosis is made, the heart will be able to be fixed without open heart surgery and without any suffering.

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