Ten months ago we were happily living in France awaiting the arrival of our second baby girl. When at a routine ultrasound check up we received startling news from our doctor in very broken and ambiguous English that our then unborn daughter might be born with down syndrome and was at risk for brain damage among other major health complications. The weight of this life altering check-up was a tremendous shock. We could feel that the course of our lives was now changed forever and we had no idea what that would mean for the future of our family. Everything we had ever worked and prayed for was now on hold in order to save the life of this baby.
Fast forward two months of unproductive doctors visits where we continued to get difficult but inconclusive news, we prayerfully decided the best thing for our daughter was to come back to Utah to try to give her a fighting chance of surviving childbirth and giving her the best possibility of having a healthy life. After leaving our job and new home we logged over 400 hours in the hospital and over a hundred of tests in order to do everything we could to keep our unborn child alive. The doctors only gave her a 50/50 chance of surviving child birth. And told us that if Zuzu wasn't kicking or behaved differently that we must rush into the hospital for potentially an emergency C-section that may or may not save her life. Those were long nights.
February 4 our little Zuzu miraculously charged her way into this world. She spent the next 2 months in the Newborn Intensive Care Unit where they confirmed she has down syndrome and two congenital heart defects. The technical terms are AV Canal and VSD. Basically she had one big heart chamber with blood flowing in all directions. which would require an open heart surgery where the surgeon would transform her 1 big chamber into the proper 4 chambers.
Since her birth she has spent her entire five months of life on oxygen and a heart monitor. She has had very little stamina and can exhaust herself just from eating a few ounces. The doctors told us that she was headed for Heart Failure (which echoed in our minds all day every day.)
July 1st she had her first open heart surgery at Primary Children's Hospital in Salt Lake City.
The surgery was supposed to take four hours but ended up taking eight. The surgery was supposed to require stopping and starting her heart once, instead it required four times. The surgery did not go as planned. Her conditions and symptoms are now worse. She is struggling with "stenosis" (the narrowing of one of her heart valves) which is putting way too much pressure on the chambers of her heart and is also increasing pressure on the outside of her lungs making it difficult for her to breath.
The doctors were almost certain she would need only one surgery and everything was suppose to function properly. But now she is back on oxygen with heart failure, blood clots, and death in her potential future.
In the coming weeks Zuzu will need to go back on the bypass machine and have her second open heart surgery at just 6 months of age. The surgeons will go in and attempt to fix her stenosis by repairing the valve. If they are not successful they will need to replace a valve in her heart with a mechanical valve. What that would mean for Zuzu is she would need multiple open heart surgeries in the coming years and for the rest of her life. They would have to replace the valve every time she outgrows it and she would need a daily shot to help her blood stay thin for the rest of her life. Blood thinners are extremely difficult to regulate in infants. The only other case our cardiologist has had with an infant on blood thinners ended briefly with the loss of the life of that baby.
We were discouraged and losing hope until a Cardiologist told us about a brand new breakthrough valve replacement surgery that surgeons are performing in Boston. It's called a Melody valve prosthetic replacement. It has only been around for a few years and has only been performed on a handful of patients. The results have been miraculous. What this would mean for Zuzu is no daily shot, no risk of blood clots or bleeding to death and hopefully just one open heart surgery for the rest of her life.
Zuzu is already changing and blessing the lives of everyone around her. Thanks to Zuzu the head of Cardiac Surgery at Primary Children's hospital has spent hours on the phone learning about the melody valve procedure from surgeons in Boston and is now making plans to go to Boston to learn how to perform the melody valve replacement surgery. This will bless and change lives of so many Infants, Toddlers, Adolescents, Adults and all their families. This means less open heart surgeries, shorter recovery time, better quality of life for everyone involved and saving dozens to hundreds of lives over the coming years.
Because there are many expenses insurance is unable to cover, we are looking for donations to help cover costs of medical expenses and flights. We are grateful to any and all who support us in saving the life of our daughter and bringing this new medical procedure to a local hospital.
You can make donations through Zuzu's surgical PayPal account at Zuzunoel@gmail.com
Or you can make a donation to Zuzu's charity account by mailing a check to Zions bank to the Zuzu Noel Miles Fund account.
180 N. University Ave, Provo Utah
Follow Zuzu's surgery and progress on Instagram @ashleymiles54 #zuzunoel
Thank you! We love you!