Kennedi was born full term at 39 weeks 4 days after a "picture perfect" pregnancy. Delivery was fast and an anxious mama and daddy were waiting to hold sweet Kennedi with several family members impatiently waiting their turn. The room went silent and the delivering Dr. asked the nurse to call in the NICU team. Around 5 nurses come flying in and wheel Kennedi down to NICU. Kennedi's heart was clearly visible as no sign of a sternum was present.
Kennedi was born June 30th, 2015 at 1:48 pm and by 6:30 pm she was at a major children's hospital an hour north of our hometown. They pulled her off the ventilator and she was breathing by herself with oxygen saturation at 100%. We stayed there for 11 days while her specialist team tried to come up with a plan to fix her sternum. They finally decided to send her home with a chest brace that she had to wear anytime she was out of the home. She was dong FANTASTIC and had no other complications.
They called us in September for chest reconstruction surgery and the plastic surgeon did an amazing job. What was supposed to be a 2- 3 day stay turned into 5. Hemangiomas started to pop up on Kennedi's face and we were unaware of what they were because they were very deep and almost looked like bruises. The Geneticist came to our room and she is the one that placed all of Kennedi's "criteria" together and gave us the official diagnosis of PHACES syndrome before we were sent home. That's when the true whirl wind swept us off of our feet.
We then had a Dermatologist, Neurologist, Cardiologist, Plastic Surgeon and Ophthalmologist to do testing and monitor our daughter at 10 weeks old. Everything seemed fine and Kennedi was doing very well. She was just taking her propanalol everyday and no other complications were present.
Fast forward to May 2018, one month before Kennedi's third birthday and we find that she is blind in her right eye due to an Optic nerve detachment whether present at birth or not we aren't sure, it had never been mentioned before. We go in June to her neurologist for a follow up scan which is just a yearly and that's when they discovered her "A". She had an angiogram in July following the diagnosis of Moya Moya disease. Following the angiogram were told she did not have it that she just had an odd layout of her arteries and a missing internal carotid. In August we requested a second opinion and are now being told she has Moya Moya syndrome and not disease.
We are again playing the waiting game while our neurologists work together to see if she will need surgery for Moya Moya following our new scans in January of 2019. Kennedi takes half of a baby aspirin once daily to lower her stroke risk.
We are learning new things daily on our Journey with PHACES. No matter the struggles Kennedi has endured she remains the happiest little girl I know. We have met so many wonderful people that God has placed in our life through PHACES.
The conference was a HUGE blessing and I encourage any and all PHACES families to attend. It is great for the children to meet other kids like them and for the parents to not feel alone on this beautiful yet scary journey we are on.