Shone's Complex

Our daughter went in for her 8th annual checkup,in April, and as with the previous year had some high blood pressure. The doctor the year before did not think much of it because there was a TON of different situations our family was going through at the time.

So, they checked the pulse in her femurs and could barely feel one. Therefore he sent us to a pediatric cardiologist. At that appointment they could not find a pulse in her legs and decided to do an echocardiogram. This revealed multiple problems with her heart:
Shone's Complex:
1) Parachute mitral valve (mitral valve stenosis)
2) Ventricular septal defect (hole in heart)
3) Bicuspid aortic valve/aortic insufficiency aortic valve
4) coarctation of Aorta
5) small left ventrical

Shone's Complex:

1) Parachute mitral valve (mitral valve stenosis)

2) Ventricular septal defect (hole in heart)

3) Bicuspid aortic valve/aortic insufficiency aortic valve

4) coarctation of Aorta

5) small left ventrical

From there we had to have MRI/MRA of heart and brain to make sure the details of what was going on.  At first they had told us that she needed Open Heart Surgery (OHS) and then after the MRI they decided to go a different route.  They decided to fix her Coarctation of the Aorta because it was almost completely closed, getting no blood to her legs and then see if the pressure change fixed the other problems. 

We decided to go with that.  The month of June was difficult considering if she got her heart rate up too much she could just drop dead (trying not to be too graphic, but honest).  We relied on the fact that our God had kept her safe these eight years without us even knowing she had the problem, He could keep her safe this rest of the way.

On July 6th, after gentic testing which ruled out Turner's Syndrome and Noonan's Syndrome, she went in to have her surgery.  She was such a trooper.  We went to two different doctors one at Lutheran General, Dr. Ilbawi and met with a team at Children's Memorial, Dr. Backer.  After lots and lots of prayer (by many people) we decided to go with Dr. Ilbawi, and could never be happier. 

Side note: Dr. Ilbawi is one of the most focused and humble doctors I have met.  He did not seek to platform himself, even we my husband and I asked him to compare himself with the other doctors.  He was gentle, but honest, as well informative.  He was patient with all of our questions and concerns and did not make us feel like we were dumb either.  His Cardiac Nurse Natalie Rudolph is amazing and a great support who will answer all the questions you need and, like Dr. Ilbawi, make you feel comfortable the whole way.  My daughter felt so comfortable with her that she walked to the operating room holding Natalie's hand.

Here is a picture of my daughter with Dr. Ilbawi, she never met him and to this day has not as he likes to focus on the procedure at hand.  Then once a year he has all the kids that he has performed surgery on for a family gathering with him. 

The next post I will post the day of her surgery for the repair of the coarctation.  This will not be her only surgery, but God knows all and knew this is all I could handle at this time.  It was enough.