Kassie is an identical twin, born in 2006. She was diagnosed with Congenital Hydrocephalus due to Aqueductal Stenosis in-utero when I was 20 weeks pregnant with her and her sister Keelie. I had pregnancy complications, as I had in the pregnancy before the twins (in that case, I had Placenta Previa). This time, I had what is called Twin-to-Twin Transfusion Syndrome, a rare disorder that occurs only in identical twin pregnancies. I ended up spending quite some time on bedrest in the hospital due to the TTTS and a variety of issues and was finally discharged and allowed to go home at 32 weeks. Two weeks later, however, at 34 weeks, I went for a prenatal appointment and ended up having to go in for an emergency c-section because of pre-eclampsia. Kassie weighed in at 3 pounds, 7 ounces and diagnosed with failure to thrive, while Keelie weighing almost 6 pounds (the weight difference was due to the Twin-to-Twin Transfusion Syndrome). Because of her Hydrocephalus and low weight, Kassie was taken right to the NICU while Keelie remained with me. I remained close by with Keelie until Kassie was discharged. After they were born, and in follow up visits, it was recommended that we follow up with a Genetics doctor, but we chose not to as we wanted more children and decided it didn't matter if the Hydrocephalus was a genetic issue or not, that God would give us the number of children he saw fit and if they had Hydrocephalus like Kassie, we would love them regardless. We did have one more child, a boy a year and two weeks later, and already had a girl who was 4 when Kassie and Keelie were born.

Kassie has had several surgeries throughout her almost 16 years of life. Her first surgery, her original shunt placement, was when she was 10 days old, while still in the NICU. It went well and after a month in the NICU, she was able to come home. At four months old, Kassie's tube became disconnected from her shunt, and she needed another surgery. That surgery also went well and there were no complications. Kassie's third surgery occurred when she was two. It was obvious to us that something was wrong, and upon taking her to the local Emergency Room for the second time in two days, she was flown to Westchester Medical Center Children's Hospital by helicopter for emergency surgery. Again, an easy surgery and no complications. Kassie's next surgery was 10 whole years later, at the age of 12. She was in full malfunction and again needed another surgery. Par for the course, there were no complications. On New Year's Eve 2020, just two years later when she was 14, Kassie required yet another surgery. Things went well, and she was okay and discharged within days. However, just three short months after, in March 2021, her surgical site was still not healed and was deteriorating. She was re-admitted to the PICU for IV antibiotics, a shunt tap, several scans, and observation to ensure there was no infection or malfunction. She spent almost two weeks in the PICU before she was released, and the surgical site was greatly improved. Still, that was not the last time Kassie would be admitted for another surgery. Her shunt was in full failure, and we were told it likely had been since soon after the last surgery on New Year's Eve and that's why her surgical site had never properly healed. She spent another two weeks in the PICU before she was able to go home.

Fast forward, and we are one year later. Kassie is about to turn 16. She is in regular education, with all the thanks in the world for that going to those who worked tirelessly with her from our local Early Intervention Program from the time she was 6 months old until she aged out when she started Kindergarten. She does have an IEP and some learning issues, but they are thankfully not that noticeable for the most part. Kassie also loves running track and playing soccer, which Mom was surprised her neurosurgeon let her do! She is still small for her age, but she doesn't seem to mind until she goes to do something a typical 16 year old girl would do and people look at her funny because they think she's no older than 12 :) She's also looking forward to getting her driver's permit in April when she turns 16, though we joke with her that she'll need to sit on a phone book to see over the steering wheel. Kassie wants to be a neurosurgeon when she is older.

We know that we have a lifetime of shunt failures and revisions ahead of us, but we try to remind her every day that she can do anything she puts her mind to, that she has two of the best neurosurgeons around taking care of her, and that God is always with her, looking out for her. The hardest part of shunt revisions for Kassie now, besides the pain and the hospital stays, is that her hair gets shaved, and she misses so much school, which I can imagine would be hard for any teenage girl dealing with this. We are hopeful that she'll have a very long time before another revision is needed, and we pray for the day when a cure will be found for Hydrocephalus and nobody, but particularly children, will have to suffer through this disorder!

Pictures are from most recent to oldest (first picture is homecoming 2021, 10th grade, and the last picture on the first row is Mom and Kassie on the day of her first shunt placement).