The last two and a half years have been life changing for our family to say the least. I think back to before that time when I had maybe heard the term hydrocephalus, but had no clue what it was. I could have never imagined just how well we would get to know this condition and many other medical terms, procedures, tests, and equipment.
In September of 2018, at 20 weeks pregnant we found out we were having identical twin boys; Jack and Micah. We also learned that they had something called Twin to Twin Transfusion Syndrome (TTTS). Within a few days we were sent to The Mayo Clinic in Rochester, MN to have laser ablation fetal surgery to correct the TTTS. Although surgery was successful, the following day we found out that our son Micah had passed away. We were heartbroken but we knew we had to stay strong and continue fighting for our survivor, Jack. With medication and other treatments I was able to stay pregnant for 6 more weeks before going into labor at 26 weeks.
Jack was born via emergency C-section at our local hospital. He weighed only 2 lbs. and 2 oz. We knew he had a big fight ahead of him, but we could tell right away that he was a fighter. Within his first week of life they discovered that Jack had a grade 3 and 4 intraventricular hemorrhage (also known as a brain bleed). Once again, Jack was sent up to Mayo Clinic for treatment. We were then informed of the potential of developing hydrocephalus and what that would mean for our boy. At close to one month old he had his first shunt placed while in the NICU. Jack spent exactly 100 days in the NICU with three brain surgeries in that time.
Today, Jack is a strong, happy, almost 2-year-old with nine brain surgeries under his belt (or diaper, if you will). He is currently almost 9 months’ surgery free! His last MRI showed a slight increase in ventricle size, so we are keeping a very close eye on him. We know there will be more surgeries on the horizon but we know our fighter can and will continue to amaze us.
He has a wonderful support system of family, friends, and community behind him. We are so incredibly lucky to live so close to such exceptional medical care. We are also grateful for the opportunities we have had to educate the people around us about this condition and for the people we have met and stories we have heard in the process. We will continue to advocate and educate whenever we can. Hydrocephalus has changed our lives and we are all stronger because of it.
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