South African 3yr old Urgent open heart in USA

A desperate plea from South Africa Mother to save 3 year old daughter. 

Kyleigh needs urgent open heart surgery in USA which cannot be done by South African Surgeons. We have only until March 2022 to get  her to Boston. As she survives on 2 collaterals of which 1 is severely narrowed. If she does not get to Boston the repair is no longer an option and she would be condemned to a heart lung transplant with 50% mortality.

We need to raise US$ 295 761 just for the surgery to be paid by end of January 2022.

www.hopeforkyleigh.co.za 

https://www.facebook.com/groups/1614560052007739/

Kyleigh Milana Kista our precious 3-year-old girl was diagnosed with a complex congenital heart defect at birth. Known as tetralogy of Fallot with pulmonary atresia , VSD & Mapca’s. This condition was first described by her Cardio Thoracic surgeon as a monster in her chest.

 

This means Kyleigh does not have value that connects the heart to the lungs, the arteries that are meant to be attached to this value is free floating and undeveloped and not connected to her heart, she has a large hole in heart and survives on 2 collateral arteries of which one has already started to narrow severely. This puts s tremendous amount of pressure on her heart

 

As a result, this is lowering Kyleigh oxygen levels causing Kyleigh to turn blue at times and remains very underweight.

 

Boston Children’s Hospital is our only hope for Kyleigh condition. As Kyleigh needs urgent help, within the next three months. Before these collateral arteries close. And all hope will be lost, and she will be condemned to a heart-lung transplant.

 

Local doctors have attempted many procedures on Kyleigh since birth. Including 3 open heart surgeries in order to stimulate Kyleigh arteries to grow. With no success to date.

 

In November 2021, our World came crashing down. When we were notified by her doctors that nothing further could be done for Kyleigh in South Africa. Her only option was to wait for her organs to start failing. At which point a heart & lung transplant would be considered with very limited donors and experience on the procedure. With none carried out to date on a pediatric patient.

 

After further research, it was discovered that the risks were quite substantial. And the life expectancy after this procedure was very low., should we be lucky enough even in getting a donor. We searched for opinions with most hospitals in SA. Only to receive the same feedback.

 

Finally, we decided to reach out to Boston Children’s Hospital in the USA for a second opinion. Who revised Kyleigh on case and restored all hope. They proposed to do an innovative technique to repair her heart, that they currently perform with great success at the hospital. By using Kyleigh current anatomy and reconstructing her blood vessels in order to flow effectively go through her lungs, while also incorporating her collateral arteries as part of this procedure.

 

Battles she  has overcome…

Kyleigh is 3 years old diagnosed with a complex congenital heart defect called Tetralogy of Fallot with pulmonary atresia & VSD & MAPCAs.

 Kyleigh has endured many trials through her journey over the past 3 years and 10 months.

At 1 week old, she contracted a superbug call CRV with 50% mortality rate, 

At only 2 weeks old Kyleigh picked up an infection called Respiratory syncytial virus (RSV) which is a serious respiratory infection putting Kyleigh back into ICU for a further 6 weeks fighting for her life

At the tender age of only 2 ½ months old Kyleigh was scheduled for her 1st open heart surgery. 

And at 4:30 the next morning Kyleigh’s heart stopped due to high potassium levels and kidney failure. 

Kyleigh lungs started filling up with fluid, but by the Grace Of God she was miraculously resuscitated and placed on dialysis.

At 8 months old Kyleigh was scheduled for a 2nd open heart surgery. Barely a week later Kyleigh picked up Pneumonia and had to be rushed back into ICU.

Kyleigh was then discharged and again infected with Bocavirus due to having a low immune system at the time. Which pushed her into heart failure and it was later discovered that her ribs were broken during surgery.

 At 18 months old Kyleigh was schedule for her 3rd open heart surgery. Another attempt to grow her pulmonary arteries!

Kyleigh's story is one of hope against all odds and no matter what she has faced, she always has a smile on her face. Her courage and bravery is inspiring

This is our final & only hope. We need to raise US $295, 761.00 by end of January 2022!