Mya Elizabeth’s Story
Mya Elizabeth
Parents Name: Tina Anderson
Childs Age: 6 weeks
Childs Condition: Truncus Arteriosis Type 1
Story: My beautiful baby angel, Mya Elizabeth, was born on May 1, 2003 at 12:02 am. My pregnancy was optimal—all vitals were great at every checkup, ultrasounds were fine, no complications during delivery (so quick there was no time for an epidural!), and she looked perfect. When I held her, I didn’t notice any problems with her at all. But after an hour, the nurses took her to the NICU for some testing, which they stated were “just in case” but nothing to be concerned about, since she was so pink and had such high APGAR scores. But a few hours later, we were told that she had Truncus Arteriosus Type 1 which also entailed a VSD. The cardiologist said it could be fixed with surgery with a success rate of 85%. The other option was 100% certain that Mya would die by 8 weeks of age. So of course we opt for the open heart surgery.
I was blessed in that I was able to take her home with me for 3 weeks before the surgery. The cardiologist felt that she was stabilized enough to go home and grow for a while. I met many parents of babies with heart defects that were not able to take their babies home before surgery, so I know that I was lucky. Being a new mom, it was the best (and most nerve-wracking) time of my life!
The surgery was the Rastelli procedure which would close the VSD and place a cadaver valve going into the right side of the heart. She would then need maintenance surgeries that would replace the cadaver valve as she grew, which was estimated at every 3-4 years until she stopped growing.
In the 12 hour surgery, the surgeon found an additional problem with Mya’s heart. She had Aortic Valve Stenosis which would need a cadaver replacement as well. Thus, the surgery was not 100% completed. The VSD was not closed but the cadaver valve for the right side was implanted. The plan was to come back in about 6 months for another surgery to correct the Aortic valve and close the VSD.
However, she ended up coding 2 times within a week of surgery. The first was 35 hours after she was taken off the vent. The second was even scarier because she was on the vent. Although the team of doctors could not figure out what caused her BP to drop, she recovered from that bout in less than a week. She was awake, recognizing my husband and I, crying (we couldn’t hear her b/c she was on the vent)…essentially acting like a baby. Then, she had 2 more codes, this time one within 3 hours of getting off the vent, and then one on the vent. I couldn’t believe how hard this little girl tried to live—she was such a fighter. The Drs were even surprised that she kept coming back. However, a few hours later she had yet another code. They kept trying for a full hour, but she had had enough. God was calling to her to be with him…
She was almost exactly 40 days old. She died on June 9, 2003 at 11:55pm, within 7 minutes of her birth time.
“Life is not measured by the number of breaths we take…but by the moments that take our breath away.”
Mya, you took our breath away. Mommy and daddy miss you so much. We think of you every day and cannot wait until we are a family again in Heaven. We love you!