Faith was born seven weeks premature via c-section because she wasn't growing and the Drs were concerned with what appeared to be a congenital heart defect (CHD)- a hole in her heart, among other things. She was a tiny little sweet pea, so tiny that the pacifier covered half of her face.
Because she was so tiny, she remained in the NICU for 6 weeks. When she finally came home, she had to take medications for the CHD. Unfortunately the medications weren't working. The hole in her heart wasn't getting any smaller and it was leading to other complications. So, at 3 months old, doctors decided that she needed to have a "simple procedure" called a PDA ligation to close the hole. Something that is, as the doctors said, a "very normal procedure" and it "could be done with their eyes closed."
While in the waiting room, the nurses came in to tell us there were complications and she was not going to come out of the OR. We were in total disbelief and then IT HIT US. We prayed harder than ever while the doctors were performing CPR and trying to keep her alive.
It was hours before she would come out of the OR and when she did, all kinds of tubes were coming out of her and she would be in an induced coma for days. The doctors had to go back in to OR mode hours later as she was still bleeding profusely. Once she was stabilized, the doctor sat us down and explained that the hole was bigger than expected and when the clamp was placed on the hole to close it, her aorta tore and she was bleeding out. So much so that they couldn't tell where the blood was coming from. They had to put a clamp on all of her arteries to figure out where it was coming from. By doing so, there was lack of blood flow and oxygen to the brain and to her spine, in essence a stroke, which caused spinal cord and brain injury. And so it was all a matter of wait and see.
Everyday the doctors gave us worst case scenarios: if she does live she may not talk, she may not see, she may not hear and she will not walk and for a while, weren't even sure if she was brain dead. We couldn't hold her for days. Then slowly but surely, she began to wake up, and about a month later, we were sent home with PT, OT and speech therapy as well as lots of medication and lots of specialist visits. We've created another family with some of these folks.
Because of the surgery, other situations have arisen. She started having seizures but thankfully she hasn't had an episode in over a year because of medication. She had to have surgery to release her hip flexors as they became contracted due to lack of movement in her legs. She was diagnosed with cerebral palsy last year due to some muscle spasticity. She also has scoliosis for which she has to wear a brace throughout the day and has worn several orthotics. Just recently we found out that she does indeed have a rare genetic disorder: Multi-systemic Smooth Muscle Syndrome. It affects all of her smooth muscles, i.e her heart, bladder, veins, etc. There have only been 7 reported cases since 1999, and in those cases the patients needed to have surgery due to possible aneurysms. Yes, aneurysms...how about that? Something else to worry about, ugh! However, it does shed some light on what may have occurred during the surgery. Because of this diagnosis, it is possible that her PDA was not normal and caused her Aorta to tear during the surgery.
We've shed lots of tears, happy and sad. We don't take for granted even the smallest of accomplishments. With Faith now at Ann Storck Center's Preschool, we know we are not in this alone. We are changed people because of this. We have met amazing therapists, people, and children with special needs who have become like family. We have learned how to heal. We have learned the power of prayer and thinking positive. The strength, determination and resilience in her tiny body... Everything that she's endured and all she will endure leaves me speechless at times. She has taught our family things that words cannot express. She IS able to see, she IS able to hear and believe me...she IS able to talk. She isn't able to walk right now but we are working on that. If she doesn't, it's okay. It took us a while to accept that. It seems scary when you write it out but she really is just an extraordinary little girl.
And for all of this I, we, are grateful!
- Wendy (Faith's Mom)
We have met amazing therapists, people and children with special needs who have become like family.