Hannah T.
North Dakota
Birth Date - November 01, 1997
Main Diagnosis - Saethre-Chotzens syndrome, multiple craniosinistosis
THEME: Songbirds
Hannah's Story
Hannah was born slightly premature in November of 1997. She had many unusual problems from early on. She didn't develop a sucking reflex until she was 9 months old so she was tube fed until then. She was also very slow in meeting developmental milestones, so at 6 months old, we were referred to a geneticist.
She had a series of genetic testing done because they did notice she had many dysmorphic features - webbed fingers - each foot had 2 big toes that were fused together and her other toes were very small, poor muscle tone, and no skull bones. Genetic testing came up with nothing at that time.
Hannah continued with multiple therapies, PT, OT, and speech to help her with her developmental disabilities. Her behavior changed over time, and at age 5, she was diagnosed with autism.
Hannah had genetic testing done again at that time because the geneticist truly believed she had some type of syndrome, didn't quit fit any particular one, but many different ones. That testing once again showed nothing.
At age 6, Hannah developed neuropathy in her extremities due to some spinal malformations which lead to having part of her toes amputated due to repeat severe bone infections because she would break bones, and not have much pain, so infection would eventually get into the bone. To prevent further spreading of the infection, many surgeries later, she had half of her toes amputated and all of her toenails. She still continues to have problems with neuropathy due to severe c-spine malformations and scoliosis.
At age 9 she had genetic testing again, and this time we did get some answers. She was diagnosed with Saethre-Chotzens syndrome - a deletion on chromosome 7 - but the geneticist recommend an orthopedist to monitor her scoliosis.
Many years, and many medical problems later, we were at Shriners Hospital in St. Paul having a routine scoliosis x-rays when a visiting neurosurgeons from Gillette Children's Specialty Hospital walked through the radiology department and noticed something very unusual that none of the doctors ever seemed to notice. Hannah had large pitting holes in her skull. The neurosurgeon came in to talk to us about what he saw on her x-rays. Without further testing, he wasn't able to make a complete diagnosis but he wanted us at Gillette Hospital right away for CT scans and MRI's.
Results were worse than anyone suspected. Doctors were amazed that she was even alive. Hannah had no skull as an infant, and a normal skull has 8 separate plates that grow while an infant grows and eventually form together by age 2. When Hannah's skull bones grew, they grew like a bowl- no separate plates or sutures. Her skull was way too small and she was going blind. The doctors said without drastic surgery to rebuild her entire skull, she would be dead in a matter of months.
This surgery had never been done anywhere in the world on someone Hannah's age. On January 5, 2012, she had a 12 hour surgery to remove her skull and facial bones to right under her eyes They used parts of her own bone along with kryptonite to build her head 13cm larger. Hannah spent quite a bit of time in intensive care and rehab after surgery.
In 2013, Hannah had 12" of tumor removed from her spinal cord. She had to be kept in an induced coma for 2 weeks until they could wake her for a long slow recovery.
In October of 2014, Hannah broke her glasses. When the ophthalmologist looked in her eyes, he could see pressure on the optic nerve. We immediately went back to St Paul to see Hannah's medical team. Once again, the worst possible scenario was in front of us. She had pappiloedema which means her skull was still too small. Because the whole front of her head had been rebuilt before, this surgery they would have to take off the back of her skull which is much more risky. Hannah also has a syndrome of the c-spine where some of her spine is fused to her skull. This posed a major problem doing surgery. It meant they would have to break and re-set her neck in order to do the surgery.
December 3rd was the big day. The same 3 Craniofacial specialists started the process of increasing Hannah's skull once again to save her life.
We are home recovering now. Hannah is a junior in high school and has missed months of school.
Hannah is an amazing miracle. There is no one else in the world like her. We have had genetic testing done again and found large sections of chromosome 7 missing. Her doctors have dubbed her with "Hannah Syndrome" because she is the one and only with her condition.
"Thank You"
I want to thank everyone who participated in making it possible for Hannah to have such a beautiful quilt. She loves it especially knowing how much her Service Dog Mudge enjoys birds. Now they have something to snuggle under they both can enjoy.
I was expecting a nice quilt, but this quilt was amazingly beautiful, a piece of art. A very special gift for my very special girl to hold onto during her long recovery ahead, and more surgeries to come. It will be a lifelong battle for Hannah, but such thoughtful gifts from strangers make it a little easier to go on another day.
You put a smile on several faces today with this quilt. Our family was all very impressed how beautiful it was and perfect for Hannah.
I can't imagine the hours of work put into a project this size, and for someone you only know by description of her medical journey. We thank you for your gift. It will keep her warm on our cold ND nights, and she plans to hang it on the wall in the hallway near her room in the summer when a lighter blanket works fine. I'm sure we will have it for many many years to come.
Thank you again. This is a very precious, selfless, and loving gift to give to Hannah during hard recovery days, and for days she will be back in the hospital. For now, Hannah and Mudge are snuggling under the "lovebirds". Thank you very much.
Sue and Hannah
