Amber: Tricuspid Atresia

I was born on August 10th, 1988. I had been trying to come for the past two days, but because of my heart I would get tired and need to rest. When I was born my parents and the doctors thought I was a perfectly, healthy baby. My whole family was celebrating, because we finally had a girl! My parents and my family’s celebration was short lived. By, the next morning the doctors were saying that I had a heart murmur. They ran as much test as they could at AGH, before I had to be transferred to Shands at The University of Florida. My daddy had to go to work the day after I was born, so my momma had to call my daddy at work and tell him that something was wrong. My parents hadn’t named me yet either, they couldn’t decide. So, the doctors called me Baby Girl McMillan. Once my daddy was able to get to the hospital and (before they performed a cardiac Cath on me), my momma and daddy decided my name was Amber, because my daddy said I looked like an Amber.

After my cath, the doctors found out that I had 3 holes in my heart. I was diagnosed with Tricuspid Atresia and VSD. I didn’t have my tricuspid valve, my pulmonary valve or a valve between my left and right atrium, these was also a big hole in my right ventricle. My doctor told my parents that I would be able to go home, but that in six months, I would need to have surgery. They told my mom to look for signs, such as fever or flared nostrils and if I had those signs I would need to be seen ASAP.

When I was about six weeks old I developed a fever, so my momma brought me into Shands. They ran a bunch of test, but couldn’t find anything wrong with me, so after 4 days of being in the hospital they let me go home. However, once I got home, my fever got worse and my nostrils were starting to flare a bit. My momma decided to take me into clinic to be seen. Not long after the nurse took us back, they told momma that I needed to be admitted and that they were going to operate on Monday. My momma will tell you that was one of the worst days of her life. My pulmonary valve was closing fast! I went from needing surgery on Monday to needing surgery that day to critical condition. They were trying everything to stabilize me, they cleared out the PICU and let momma stay with them. I was holding on to my momma’s pinky and I never took my eyes off of her, the doctors were afraid if they made her leave, I would die. It got so bad, that the doctors told my momma that if they took me into surgery, that I would die. My oxygen sats had dropped down to 9%...they are supposed to be at 100%! My daddy was at work and finally got the message about how bad I was. When my daddy got to the hospital, Dr. Alexander and momma told him how bad things were. Dr. Alexander said he wanted to try one more thing to see if my sats would come up. My momma and daddy started praying over me, praying that God would save me. My momma said that when they ended their prayer that it was very bright over me and that my sats were soaring higher and higher. She said that the doctors grabbed me off the table and ran to the OR. Dr. Alexander put a shunt in my artery in my right arm. It creates a pathway for the blood to reach the lungs. My blood was mixed, so I was a blue baby.

I was fine for a while, but when I was three years old I had my first open heart surgery and then my next one at 4 and half. My doctors told my parents that children did better having the Fontan procedure in stages. The fontan procedure helped my oxygen sats and to return blood flow to my heart, meaning I was no longer a blue baby. I was pink, finally! My momma has said that watching me grow up was hard at times because it was difficult for me to do simple things, like crawling and walking, but I kept at it till I could do it. After I had my open heart surgery, I was able to be more active.

I have never let my heart stop me from doing what I want to do. I was always determined to be like everyone else my age. I look dance lessons and I was a cheerleader. My doctors have always encouraged me to be active.

My heart did great till July 2004. I started feeling funny one Sunday afternoon and my parents took me up to the fire station to see what was going on. My heart rate was beating 204 beats a minute! I was taken by ambulance to Shands and I was cardioverted. I was put on a new medicine and was able to go home. A month later, the same thing happened and I was cardioverted again. My doctor ran some test and found out that I needed to have a revision of the fontan surgery. My right atrium was enlarged and they decided that they would put a tube in my right atrium to get the blood pumping again. They let me go home, with they plan to operate later in March. I should have had the surgery sooner, but I was a junior in high school and it was my dream to be in our schools beauty pageant. My momma took me every year to see it and I couldn’t wait to be a junior, so I could be in it. My doctors respected my wishes and put me on different medications. They found one medicine that would work well, but in order to be put on it…I had to be taken off of the current one that I was on, then wait 3 days. Well, during that time my heart rate went up to 220 and I ended up in the hospital. They were going to transfer me from Shands to Wolfson’s children hospital to do a cath to see what was going on. While waiting, I sitting in my hospital bed reading, my heart stopped. It stopped for almost 30 seconds. But when I came back too, I was fine and my heart was beating normal. My new medicine finally kicked in. Since my medicine finally kicked in, they decided not to do the cath. Three days after I was a in our school pageant, I had the fontan revision surgery, my third open heart surgery.

The day after my surgery, I had my first and only seizure. I was paralyzed for a couple of days on my left side, but there was no permanent damage. In November 2006 I had a mini stroke, I found out that I had a blood clot in my heart, in the tube that they just put in my heart. My surgeon did a risky, but successful procedure, he put a metal umbrella like thing in the hole that was in the tube. My blood clot was flicking off and going to my brain, but when he closed up the hole I stopped having strokes. I was put on Coumadin and my doctors left the blood clot alone, hoping it would dissolve on its own.

Things were great for a while. It was nice to feel normal again! In November 2009, I started dating my husband and we were engaged 8 months later. During the mist of planning a wedding, I started having dizzy spells and it felt like my heart was dropping. I wore, I don’t know how many heart monitors before my doctors finally saw that my heart was dropping to 30 beats a minute. Since I had trouble before with my heart racing and now this new problem, my doctor decided I needed a pacemaker.

I was upset because I was getting married in 6 months! So, we made a plan to have my surgery done ASAP and two days later…I had surgery. I have gone through some rough times post-surgery, but my pacemaker surgery was hell! It was not the simple, easy surgery I kept hearing about. I ended up getting a bad infection and almost had to redo the whole procedure again!

Finally, in July 2011 I felt normal again and started back into full wedding mode! My husband and I were married on September 24th, 2011, five months after my pacemaker surgery. It was the happiest day of my life. In July 2012, I had a routine cath and found out that my blood clot was finally gone! It was such a blessing. Things were going great, my husband and I bought our first home in 2015 and then started pursuing our dream to be parents through adoption. Our dreams were almost dashed before they every really began, in late November 2016, I found out that I had cardiac cirrhosis of the liver and that I had possibility of liver cancer. On top of that, we found out that I needed to have my pacemaker battery replaced. November 28th-December 10th were some of the hardest times in my life. I had a CT scan to see if I had cancer/how bad the cirrhosis was. Five days later, we got the best news ever NO CANCER! I cried happy tears! My liver doctor still wanted to see how bad my cirrhosis was, so he ordered an EDG to see how bad it was. That was scheduled for January 17th. During Christmas break, I had my pacemaker battery replaced and it was the easiest surgery ever! I wish they could all be that easy. On January 17th, we got another prayer answered, my cirrhosis wasn’t as bad as they had feared and that I was fine live my life as normal for another two years, before I would need more testing.

My husband and I our finally pursuing our dream to be parents through adoption! Hopefully, during the next year our dream will come true! This is not the life I would have planned for myself. It is not an easy one. I shouldn’t be here, but 28 years ago God breathed life back into me. Why…well I’m not sure, (that’s one of my questions for him one day.) But, God obviously thinks I am strong enough to live this life. I’ll keep fighting and living my life. I have my days where I wish I was “normal” but my husband says that being normal is overrated and that I am perfect just the way I am.

“You’re a fighter,my dear. The most important kind of fighter. You are fighting for the life of your heart”

Yasmin Mogahed



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