At 32 weeks pregnant I came in weekly for ultrasounds and Biophysical Profiling. I got the call: our baby’s heart looked a little larger than normal. I saw a cardiologist and had my 1st fetal ECHO. She was diagnosed with an enlarged heart. She was delivered the day I became 37 weeks along. She had her 1st ECHO and EKG. Her EF was even lower and she had a Prolonged Q-T Interval.
We were transferred to Children’s Hospital in Milwaukee 3 days later, where they admitted her into the NICU and hooked her up to an EKG around the clock. They ran a genetics panel, looking for a genetic mutations that cause a Congenital Heart Defect (CHD) called Left Ventricular Non-Compaction.
We were sent home after 8 days in the NICU, where I was trained to watch for the signs of heart failure 24/7. Twice a week we went to clinic for ECHOs and EKGs, in the beginning, then monthly. Every time her ejection fraction got a little bit worse and her heart function poorer. But through it all, Maggie remained the happiest, smiley baby I have ever known and she thrived, gaining an oz a day. From the outside, she didn’t look sick at all.
Then one day she became a little fussy and inconsolable. Then she got a runny nose and wouldn’t eat as well. That Friday we met the Transplant Team at Children’s in Milwaukee for the 1st time. She was admitted into the CardiacICU that day after an ECHO showed an ejection fraction of only 12%. 30% or lower is considered heart failure. She was put on cardiac life support and diagnosed with Suspected Left Ventricular Non-Compaction (genetics tests had come back negative, but she still strongly had all the symptoms, leading her cardiologists to believe that she had a new form of the disease yet undiscovered. To this day, we still don’t have that answer,) Severe Left Vebtricular Systolic Dysfuntion, Prolonged Q-T Interval, & Failure to Thrive. 5 days later, on June 24th, she was listed as a status 1A on the heart transplant list- the very highest of priority- she would not survive if she did not get a new heart.
On July 12th, just 19 days later, we received the call that they found her a new heart. After the hardest “see you later” of my life, we let them wheel our then 3 month old off to the operating room. After 10 long hours, we were told her new heart was in and beating on its own and they were able to take her off the heart-lung bypass machine. We briefly saw her in the hallway as they wheeled her back to the CICU for recovery. It was the most beautiful and scary sight I’ve ever seen. Wires, tubes, bandages, and dried blood was everywhere.
Slowly, over the next week, she woke up and almost immediately was herself again. We began to give her 15 medications a day, 1-3 times each daily to maintain her health and keep her body from rejecting her new heart. She will be on her anti-rejection medications for the rest of her life.
She recovered quickly, began gaining weight again, and her heart has begun to settle into its new home, showing a new ejection fraction of 70+% on her ECHO.
She was released from the hospital on July 28th. Her 6 month biopsy just revealed that she remains rejection free!
We spent 40 days in the CICU. The 1st year will require close, close monitoring of her health for signs of rejection, infection, and heart failure.
Magnolia is proof that God is great and miracles happen every day. https://www.facebook.com/Maggiessweetheart2015
Thank you all!!
Love, Maggie’s momma,
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