(Written April 2003)
Amber went through many probems following her birth on October 17, 1985. Born at Southern Maryland Hospital in Clinton, Maryland at 12:42 a.m. she was very pale at birth and was therefore rushed out of the delivery room, leaving me only a second to look at the life I brought into this world. I was then taken to my room, there I wondered what was going on with Amber. Other mothers were also in the room and their babies were brought to them, and I laid there wondering why they hadn't brought me my baby. I wanted to hold her so bad. What was going on? I was so worried something was terribly wrong! I was right.
The pediatrician that was in the delivery room while I was giving birth to Amber, came into my hospital room and told me that Amber was having problems and that they had her on a ventilator (breathing machine) and needed my consent to do a spinal tap on Amber to check for spinal meningitis. They did the spinal tap and found nothing, and therefore they decided that Amber needed to be tranferred to Children's Hospital in Washington, D.C. for tests and a heart catheter. They allowed me to see her before she went to Children's Hospital in Washington, D.C. When I saw her she was in an incubator type of bed that was heated and she was naked and hooked to many different things, like the ventilator, and heart pads, and a heart beat machine. She was sleeping soundly because they had given her a sedative to put her to sleep and relax her.
They rushed her to Children's by ambulance, where her grandfather was already at, waiting for her. There she was given a heart catheter and they found she had a heart disease called Transposition of the great vessels. The heart catheter was given to try to help her gases in her body mix better so she would have color and so they could postpone the surgery she needed until she was older and stronger and able to withstand the surgery. The catheter didn't seem to do very well. Meanwhile she was being hospitalized at Children's. 
When I got out of Southern Maryland Hospital, the next day, I was able to stay nights with Amber at Children's. They decided they needed to do another catheter to see why the first one didn't work. They found no reason why the first one didn't work. Therefore they decided Amber needed to have the surgery then, instead of waiting until she was older. When they were bringing her back to her room after the second heart catheter, Amber's heart sped up very rapidly and irregularly . She was given an I.V. with medicine to bring her heart rate back to normal. When she was back in the room, they kept her on a heart machine to keep an eye on her heart rate. That was one of the nights that I was at home, and Amber's heart rate went rapidly to 269 beats per minute and I was called immediately to be told that they needed to use shock pads on Amber to try and bring her heart rate down. This was unsuccessful, so I was called again and told they would try giving Amber a medication to slow her heart down through an I.V. but this didn't succeed either. Amber's heart may fail. We were all panicked! We prayed since Amber was born, and prayed even harder now. Thank goodness the medication was finally successful.
Amber went into surgery on October 30 when she was only thirteen days old. She went in at 1:00 p.m. and wasn't out till 11:45 p.m. it was a long and scary wait. She made it through surgery really great. She was hooked up to many things again! The ventilator tubes that were draining her chest, I.V.'s in her head and arms, and she was really swollen in her face. She was released from the hospital less than a week after surgery. She was on medications and will stay on digoxin for a long time. She has had to go back a few times because of cartilage causing infections in her incision. She is a miracle baby!
/\~Written by Amber's Mom~/\
Amber at 10 days old in the NICU with Mom
I am now 17 years old. I haven't really had too many problems since my surgery in 1985. I still have my yearly trips to the cardiologist for all my tests and that's something that will have to continue for the rest of my life.
The cardiologist say that if I do end up having problems with my heart, they just want to go ahead and give me a heart transplant. But I hope that that doesn't have to happen.
The one time when I had a problem was when my holter monitors kept on coming back abnormal in 1998. They said that I was having irregular heart beats so I had to go to MUSC in Charleston for an electrophysiology test to make sure I wasn't having arrythmias. Everything came back normal and as soon as I woke up from anesthesia, I was eating a 12" turkey sub, since I didn't get to eat before the test.
In 2000, I began having a lot of problems with my heart racing. I went to MUSC for an echocardiogram and EKG, but they didn't find anything that could be related to my heart racing like it was. They sent me home with a credit card type of thing that had four electrodes on the bottom of it. Everytime my heart started to race I placed it on my chest and hit a button. Then when it was done I would send it over the phone and the doctors would read it. It was kind of like an EKG. Nothing bad ever showed up, just that my heart rate went up to about 130 beats per minute. After awhile it went away and I felt much better.
I think that everything I have been through has made me realize how important doctors, nurses, and other people in the medical field are. I hope to one day be a doctor, maybe even a cardiologist. I will be starting college this fall (2003) with a major in Pre-medical/ Biology.
Even though I have had many medical setbacks throughout my life, they have just made me become a stronger person and be more passionate about my goals.
I am creating a website all about the different congenital heart defects.
You can view it HERE
~Amber~
Copyright(c)2003-Amber & Mom
Hearts of Hope United~
Feature Children
& Their Guest Book