The Story Of a Mother Who Didn't Give Up.......

by Krystal Baker
(New Boston Ohio USA)

This is her, being shy and full of bubbly smiles!!!

Bridget Chanelle Johnson was born November 28th 2007 4lbs 10oz 17" long. She was born with a rare complex congenital heart defect. Hypoplastic Left Heart Syndrome (hlhs) , Pulmonary Valve stenosis, Aterial Septal Defect.

First off let me explain everything just a little bit. HLHS, is where instead of having 4 chambers to a normal heart, the left side is under developed. The pumping chamber is what controls blood to the lungs and then to the body. Bridget's pumping chamber was never fully developed. Pulmonary valve stenosis is where the valve can either be leaky, too thick or too narrow. Bridget's was too thick so the 4 leftlets of skin couldn't open all the way to help push the blood to her lungs.

Aterial septal defect is where there is a flap in the skin that is attached and need to have a "septopistmy" to rip open the flap so blood can pass through to go through the right upper chambers to relieve some pressure of the heart. So basically Bridget lived for 2 months off a quarter piece of her heart. We found out about 2 of the 3 conditions in utero in echocardiograms ( an ultrasound of just the heart).

There is no proven known cause of these rare heart conditions. HLHS has a possible role though. I'll explain. Genetics could play a role in some hlhs babies. As explained by a doctor to me, when you get pregnant there are 23 chromosomes that connect. In a lot of hlhs babies they are showing that in the 22nd chromosome there is a genetic defect that doesn’t allow it to connect properly. That wasn't Bridget’s case though. Her conditions are still being studied in labs world wide. See, Bridget is the first and only known survivor of these conditions all combined. There have been only 2 proven cases of other babies but sadly they were found during autopsy reports.

Anyways, we decided to go through with a "Hybrid Procedure" instead of the full blown "Norwood procedure" which poses very considerable risks. The hybrid is a less drastic open heart that has 3 surgeries totaling to "fix" but not cure an hlhs condition. Bridget had her first open heart December 6th, she had a rough time with it. She swell really bad and nearly died on us. The next day unexpectedly she had to go in for an emergency ballooning and septospisty because the surgery didn't go as planned and she had such a rough time. A lot of stuff happened from there. She coded on us once and nearly coded twice after that. She had to receive about 15-20 blood transfusions. We then found out that she had damage to her brain. The thalamus gland. Which controls pain sensation. So she could either have an extremely sensitive touch or a touch she doesn't feel. But luckily doctors told us that because she is so young her brain can compensate for the damage and route around it, which I think she has already done.

Doctors then decided that Bridget needs to be put on a heart transplant list because there were no other options to help her. She wasn't breathing on her own because her body was too exhausted just pumping blood. December 31st she was declared on the UNOS list. Jan. 19th 2008 she received a heart clear from Texas. We expected it to be a long wait because she was so tiny.. but she got a PERFECT match.

Since then she has done wonders. She is truly a little miracle baby. She finally started breathing on her own just 3 days after her heart transplant. Now she is off all oxygen, her heart function is excellent, and she’s showing no signs of rejection. She couldn't eat for some time on her own, but she finally started eating. Now At 4 1/2 months old she got out of the hospital at 3 months old exactly. She has done wonders. She has doubled her weight and doctors tell us she has gained more weight than any other heart transplant recipient has so far. She is a whopping 9lbs and 22" tall. At 4 months old she has done fabulous! She smiles, she coos like a normal child, she is just smaller than normal.

I'm so glad I didn't give up, if I would have done what doctors told me to, I wouldn't have the beautiful child that smiles back at me today. It's definitely been a very long rough start for her and our family, but she has truly been an inspiration to her family and we are so proud of the miracle that was given to us.