After what was a "normal" pregnancy, and 17 hours of labor, our daughter Selma was born. Because she had a fever when she was born they took her to the NICU. We soon learned that she had a seizure and a CT scan revealed that she had suffered a stroke and had a severe (Grade 5) brain hemorrhage. A priest was called and she was baptized in the NICU right before being rushed to a nearby Children’s hospital. By the time Selma reached the Children’s hospital she was in a coma. They determined that she needed emergency brain surgery to evacuate the hemorrhage and remove a blood clot from her brain. The surgery lasted 3 hours, but she made it through; and she was still less than 24 hours old.
When I saw her after the surgery she was hooked up to countless machines monitoring her brain, her heart, her breathing. After 4 days she finally opened her eyes and it took another three days before my husband and I could hold her in our arms. Each day she got a little stronger and after a little over two weeks in the Children’s hospital we were able to bring her home.
During a follow up MRI her doctor found that the ventricles in her brain were enlarging due to an excess of cerebrospinal fluid; she had developed Hydrocephalus. At 4 months old she had her VP shunt surgery. Her Neurosurgeon explained to us that her shunt is a treatment, not a cure and that it could malfunction at any time. She is monitored closely by her Pediatrician, Neurologist, Neonatologist and Neurosurgeon. We had a few scares and visits to the hospital as precautions, but she was doing well.
At 21 months old Selma was taken to the hospital due to vomiting and extreme lethargy. Possible signs that there was a problem with her shunt. After a number of tests, they determined that she needed another emergency brain surgery to remove a blockage in the ventricular catheter of her shunt. Her 3rd brain surgery and she was only 21 months old. During a follow up visit with her Neurosurgeon he told us that he hopes this one will last a while; not forever, not a long time…"a while". It is at that point that we started to feel as if a sentence had been handed out to us. We would live every day for the rest of our lives wondering if today is the day that her shunt will fail again.
Selma is now a happy two year old. She receives Physical and Occupational therapy 2 times per week. She’s a little behind in her motor skills, but through Early Intervention she is making progress every day. It is nothing short of a miracle that she is walking and talking amongst her peers. She's even counting in English and Spanish and can sing her ABC’s. She reminds us every day just how strong she truly is.
The Pediatric Hydrocephalus Foundation has allowed us to meet several children and parents who are going through the same physical and emotional issues as our family. We have been able to lean on each other through difficult times and pray for each other when we know it is in God’s hands. I cannot even count the number of times that I have picked up the phone and called another “Hydro Mom” to ask a question or just for support…an invaluable resource during what always seems like an insurmountable moment in our lives.
We have come to learn that Hydrocephalus is not a sentence to be served, but a reminder of how special our child is and that she truly is a gift from God.