In late April I went for an ultrasound and I was informed that my son was going to be born with an encephalocele and hydrocephalus. At that time, the doctors informed me of my options. The only option that was best for me and my family was that I was carry both my son and daughter to term (or as long as I possibly could) to the best of my ability.
The twins were born on September 4th 2013, Georgi Anne and Thomas Michael. Luckily, Thomas was not born with either condition but was born with a meningocele. Basically, he was born with a hole in his skull and a sac filled with spinal fluid appeared on the backside/midline of his head. He was also born with an ASD in his heart (he currently sees a cardiologist every 3 months to monitor the condition). He may need a surgery to repair this defect in the future.
Since we were well aware in advance that Thomas was going to need a pediatric neurosurgeon upon his arrival, I was treated throughout my pregnancy and delivered at Duke University Hospital in Durham, NC. On September 6, 2013 Thomas went into surgery to repair the meningocele. Thomas did really well during surgery and stayed in the NICU for 9 days. He went home on September 12th 2013.
Thomas and Georgi have both done well and are growing fast. We have had a couple bumps in the road ear infections, thrush, and other common illnesses that infants acquire, but overall they have done well.
Then in April 2013 Thomas became really ill and ended up in the hospital. He was diagnosed with a case of pneumonia and needed to stay 3 days at Wake Med Hospital in Raleigh, NC with oxygen support in order to get better.
Both twins continued to do well and then at our 9 month well check-up the pediatrician voiced concerns about the shape of Thomas head. She wanted to know when the next time we were going to have an appointment with the neurosurgeon. I reminded her that the neurosurgeon had expressed they only needed to see Thomas if the pediatrician or I had a concern.
Of course her concern worried me and I contacted the neurosurgeon the next day and set up an appointment. On June 12th 2014 we were headed to Duke Hospital. We met with the neurosurgeon and he wanted to have a CT scan performed on Thomas to get a better look at his skull and brain.
On June 23rd we went back to Duke and had a CT scan done. Later that same afternoon the neurosurgeon called me to inform me that the CT scan showed that a suture in his skull had fused too soon. He also informed me that Thomas was as going to need another surgery to repair his skull. If the repair is not performed it could cause brain damage because in the skulls current condition it will restrict the brain as it grows.
On July 17th we are meeting with the doctor’s to review and schedule the procedure for the beginning of August. The procedure will be performed at Duke University Hospital in Durham, NC. Thomas will need to be in the hospital for 3 to 4 days, and then follow specific instructions 2 weeks after the procedure.
Since the twins have been born we have accrued a large amount of medical bills. We are asking friends, family, and community members to please contribute to helping us climb out of this debt. We want only the best for our children. Your contributions and support are greatly appreciated.
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