Have a heart...Have hope!! (PLEASE VOTE POPULAR)

Heart 2 Heart

Have a heart...Have hope!! (PLEASE VOTE POPULAR)
Feb 9, 2010 at 11:45 AM
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- tinkerbell76
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This week is Congenital Heart Defect (CHD) Awareness week!! Many will ask why is there a need for awareness of CHD. It is simple:

CHD IS THE NUMBER ONE BIRTH DEFECT!!!

My sweet Cassiana is one out of every hundred babies that is born with Congenital Heart Defects. She entered into this world on June 22, 2009. Cassiana was born with the following Congenital Heart Defects (CHD): double outlet right ventricle, unbalanced AV canal, large ASD, mitral atresia, and tricupsid valve regurgitation. The doctors have given her a 50/50 chance at life.

She under went her first open-heart surgery at 4 days old.

She has an amazing fighting spirit and went home at 17 days old. To care for her at home we had to give her 4-5 meds twice a day and follow a strict every 3 hour feeding schedule. Cassiana could only be allowed to drink from the bottle for no more than 20 minutes and the rest of the feeding had to put down her NG tube. Eating for Cassiana is like you or I running a marathon. It takes so much work for her and it burns alot of calories. Cassiana again amazed the doctors and was taking all her feedings by bottle and didn't need her NG tube anymore

Cassiana was almost a month old and she wasn't acting herself. She started to vomit after her feedings. Then, she started to refuse feedings and was crying and could not be consoled. Within hours she started to have grunted breathing. We knew something was wrong. A quick call to the on-call Cardiology fellow was made. She advised us to take her to the nearest hospital for evaluation. She did not feel comfortable with us making an over an hour drive with Cassiana in that condition. Our nearest hospital was 5 minutes away. The emergency room staff was not knowledgeable enough to know that there was something wrong with Cassiana. They made me feel silly for taking her in and sent us home telling us she just was colicky. They made a huge error in judgement. The next morning Cassiana had a fever and I called back to Cardiology and was told to rush her in. Cassiana wasn't doing well! Outwardly she showed no signs of infection but she had a terrible infection brewing inside of her. Soon it became very apparent what was wrong. A pus filled pocket formed on her incision site and was quickly getting bigger and the area around it was becoming red and inflamed. She had developed a staph infection in her incision site and it had entered into her blood stream. This infection was very serious. Cassiana no longer had the strength to take a bottle and she had to have the NG tube put back in.

Cassiana stayed 13 days in the hospital and had a central line placed in her upper thigh called a Broviac. Antibiotics were given through the Broviac for 5 weeks. Our luck with the Broviac was not so good. Within 24 hours it clotted off and a declotting drug TPA was used to unclot it. Several times heparin was used to unclot her line as well. Then, her line got a hole in it and a new Broviac had to be placed in the other leg.

A week after the Broviac was pulled Cassiana started to have increased vomiting and her oxygen saturation's were dropping into the 60's (normal for her is 77). Again, she was readmitted to the hospital to undergo testing and rehydration. Thank goodness it was a short 3 day stay.

Feedings continued to be an issue. Cassiana was vomiting after almost every feeding. She just could not tolerate 27 K cal, 72 cc feedings every 3 hours. Her doctors decided to try a pump at night for 10 hours. This meant that Cassiana had to have monitors on her at night and she had to stay at a 30 degree angle. She would need to sleep in her bouncy chair or propt up in her boppy. During the day I had to feed her by NG over an hour to help her tolerate her feedings better. Unfortunately, none of it was helping. To help with the feedings it was decided that Cassiana would need a G-tube placed. The G-tube was to be placed on October 9th but on October 5th while seeing her pediatrician she has a screaming/thrashing episode and she was looking blue. He immediately called Cardiology and we were sent to the hospital again. Cassiana had numerous episodes like that for 4 days. Many test were done one her: CT scan, bone scan, EKG, EEG, echo, chest x-ray, heart cath and many labs.

The heart cath showed that she had some narrowing in her shunt and she was getting restricted blood flow. Cassiana needed her second open-heart surgery.

After 22 days in the hospital she was able to return home. Her oxygen saturations were finally up to 90% and she was able to hold down her feedings.

During the fall and winter months we live as shut-ins. Cassiana's immune system is weak and she could get very sick from the simplest of germs. Our hands must be washed and sanitized constantly and only air-dried or dried with paper towels. Daily we must sanitize any surface that our hands might touch. The other children can't have friends over on a regular basis, we have to screen them first. It has been a huge adjustment for our whole family.

Cassiana is now 7 months old. She rolls over and scoots on her back. She is a MIRACLE!!

This journey that she is on is just the beginning. Many more heart procedures will be necessary, at least one more major open-heart surgery, and eventually a heart transplant.

February 7-14 is Congenital Heart Defect Awareness week!! There is a strong need for increased CHD research funding, CHD education to the general public, enhanced care to CHD patients, and increase resources and support for CHD families.

If that isn't enough to get your attention then reflect on the following facts:

1 in every 100 babies is born with a CHD
This year, almost 40,000 babies will be born with a congenital heart defect. Over 4,000 of them will not live to see their first birthday.
Although some babies will be diagnosed at birth, sometimes the diagnosis is not made until days, weeks, months, or even years after. In some cases, CHDs are not detected until adolescence or adulthood.
In the U.S., twice as many children die from congenital heart defects each year than from all forms of childhood cancer combined; yet funding for pediatric cancer research is five times higher than funding for CHDs.
Of every dollar the government spends on medical funding, only a fraction of a penny goes toward congenital heart defect research.