We had attempted to have another child for quite some time before Reagan was born. We suffered many setbacks including a miscarriage, which devastated us both. We stood strong as a family and turned to God for His guidance. We found our way out of the bad days and continued our attempts to conceive. In July, 2010, we were finally pregnant again!! The joy, excitement, happiness, and love radiated from the both of us. We were ecstatic!
We started our doctor visits right away, which were frequent due to the miscarriages and Placenta Previa that had placed us in the “High-Risk” pregnancy category. At sixteen weeks gestation, during our second ultrasound, our sonographer alerted us to something being wrong with our baby. She told us she appeared to have fluid on her brain. She told us that she found the fluid during our first ultrasound but wanted to be sure it wouldn't work itself out. She sent us from the ultrasound room into an exam room to meet with the doctor. Needless to say we were freaking out. We had no clue what was going on. The OB came in and told us that our daughter had Hydrocephalus. We looked at him in confusion and disbelief. Hydrocephalus...what is that????? The doctor explained that there are tubes that run through the spinal column that balance the amount of fluid that is in and around the brain. This fluid acts as a natural cushion for the brain but the problem is that Reagan's was not draining as it needed to. There is a device from the 50’s that can help maintain the fluid’s pressure called a shunt. They are inserted in the brain to drain the fluid and have to be replaced many times throughout their lives because they are not a permanent fix. . . . . . Hydrocephalus is incurable. . . . . .
The joy of the next 18 weeks of our pregnancy was stolen from us that day. Instead of planning her newborn picture appointment and picking out a dress to come home from the hospital in, we were planning life or death medical treatment for our unborn child and trying to explain to our 5 year old daughter that her sissy is very sick. Of course we wanted to meet our angel baby, but what quality of life will she have? Will she live? Is she in pain? During the next few months we had repeated ultrasounds preformed so the growth of her head could be measured. Only to be told nothing could be done at that time. It was by far the most helpless, awful, and depressing feeling you can imagine.
At our next ultrasound appointment, at 33 weeks, the ventricles in Reagan's head had almost doubled in size. The neurosurgeon (that was to do Reagan’s shunt surgery at birth) came into the exam room and explained that the pressure of the fluid was too much on her brain and it was time to take her. He advised us to take the weekend to get our last minute preparations in order and be back in a few days to have our baby.
The following Tuesday, March 8th, 2011, we became the proud parents of Miss Reagan Grace Roberts. She was 6 weeks premature and weighed in at a whopping 6 lbs. 8 oz. It was an amazing day, a day that will stay with us forever. A sense of relief came over us because now this beautiful child was here with us and we can now treat her condition. The day after her birth, she went into the operating room for her first brain surgery to have her shunt placed. We spent the next 13 days in the NICU at Vanderbilt Children's Hospital in Nashville, Tennessee.
We struggled through some hard times during our stay, but we watched our daughter amaze the doctors with her strength and resiliency. After her release we just sat back and enjoyed her peacefulness for the first time since she had been diagnosed with Hydrocephalus in utero.
Fast forward to the present; Reagan rolled over at 4 months, she sat up at 17 months, crawled at 20 months, took her first step at 28 months, and walked unsupported at 39 months (3 ˝ years old). Reagan Grace is now 4 years old and is a happy little girl. She loves anything and everything sweet, watermelon, doggies, baby dolls, Daniel Tiger and her big sister! She is mortified by moving windshield wipers!!She has been in physical and occupational therapy her entire life. She is now in pre-school for special needs and absolutely LOVES it. She is so intelligent for her age. Academically, she scores higher than other peers her age. She has had 3 shunt related surgeries to date.
*****Shunt failure is something that will haunt our family forever without better treatment options. At the first sign of irritability, sleepiness, fever, flu symptoms, and vomiting, my first thought is “Oh NO! Her shunt is failing!” I mean, a little plastic device inside her head is keeping her alive!?! Really, what year is this? Don’t get me wrong I LOVE SHUNTS! They are all we have. But SHE deserves something better!!!!!
The Roberts Family Kel, Danielle, Kayden, and Reagan Grace