Our Little Miracle

Georgia is our miracle child. She is 3 1/2 years old and is severely disabled and has special needs. My story begins when I was 21 weeks pregnant with twins. On Christmas Eve I went in for an ultrasound and was told that Baby A (Georgia) had fluid on her brain, a condition called Hydrocephalus. I was told that worst case scenario they'd have to put a shunt in after she was born to drain the fluid. I was told to see a perinatologist and did so the next week on New Year's Eve. Our whole world was torn apart in that visit. We were told it wasn't just fluid on the brain that she didn't have a brain, a condition called Hydranecephaly. We were told she would survive until birth but would not live long thereafter. We were told she may only live minutes or days but definitely not longer than 6 months. We were given no hope and told there was no way it was a mistake. We were advised to plan for her funeral. For the next 4 months we grieved for our little girl who wasn't even born yet. We planned a funeral and bought a burial plot. All we could do was prepare for the worst but hope for the best, that she at least would come home for a little while.


At 36 weeks my doctors induced me because there was concern about Georgia's head size. Being Baby A she was born first, she was held up so I could see her and then was quickly wisked away from me to the awaiting NICU team, I didn't even get to hold her. My husband went with her because if anything happened I didn't want her to be alone. Minutes later, while I was delivering Baby B (Eden) my husband was back by my side, I told him to go be with Georgia, he told me Georgia was fine and had even gotten a 9 on her Apgar. She was already proving that she was a miracle. She was breathing on her own, something we were told not to expect. Georgia did fantastic! She even ate on her own. She was able to be in the well baby nursery with her sister. After 3 days in the hospital we were able to go home with both babies but not for long. The night we got home (Easter Sunday) she crashed, she couldn't keep her oxygen up, she stopped eating and she couldn't maintain her temperature. It was the longest night of my life. I was convinced that I was losing her. We took her to the pediatrician the next day. He took Georgia's temperature, it was 91 degrees, the doctor thought the thermometer must be broken, he checked again, same result. He told us to go home and pack a bag, a room would be waiting for us at the hospital.

We took her to our local children's hospital for what we thought was to get her stabilized and bring her home to let her die. Several days after being in the hospital we met with the palliative care team to discuss when we would bring her back to the hospital and when we would just let her go; Georgia's neurosurgeon walked in and changed our lives once again. He told us that the prenatal diagnosis of hydranencephaly was wrong. We were told she did in fact have Hydrocephalus and if they put in a shunt there was a possibility she could lead a perfectly normal life. We also learned Georgia has a condition called Sept Optic Dysplasia which means her optic nerves are small and she is visually impaired. We also discovered that Georgia has seizures. At just 13 days old and weighing less than 5 pounds, Georgia had brain surgery to have her shunt placed. The shunt pumps the cerebral spinal fluid from the brain down a catherter under the skin behind the ear and down into her abdomen where it is reabsorbed by the body. The shunt looked huge on her tiny little head.

When Georgia was almost a month old we finally got to take her home from the hospital. Once home things didn't get any easier, she came home on oxygen and a feeding tube (which she pulled out after 2 weeks and started eating orally) and she was an unbelievably fussy baby. She could scream for up to 20 hours per day. She only slept 2 hours at night and 45 minutes during the day. I was exhausted. Here I was a new mom.Of twins. One of which needed constant care. When Georgia was almost 6 months old after dozens of doctor visits with various specialists, we discovered she had horrible reflux. The reflux was also causing her to have what we later learned were Thalamic Storms, where the brain basically loses control over the autonomic systems of the body. She would start breathing heavily, her temperature would increase to as high as 104 degrees and her heart rate would sky rocket to as high as 200 bpm. She would be in this state for hours. We finally convinced a surgeon to perform a Nissen fundoplication (where part of the stomach is wrapped around the esophagus preventing any acid from coming up), Nissens are typically not performed on such young children. Ever since her Nissen she has been a different baby. For the most part Georgia is calm and peaceful now.

Our world was again turned upside down when Georgia was about 10 months old. Another MRI was performed and we were told that there was more going on than just Hydrocephalus. Her brain just didn't develop correctly. She has a small rim of cerebral cortex around the edge of her skull but most of her brain is filled with fluid. Her brain stem is small and malformed and her cerebellum is small. Her doctors have never seen brain anatomy like hers so the closest diagnosis they can get is Hydrocephalus but that didn't even begin to describe what is going on. She is severely disabled and is unable to even lift her head, let alone roll over, sit up, crawl or walk.

Its been quite the rollercoaster ride. Every aspect of our lives have changed. I used to be a very successful corporate attorney but gave up my career to stay home with the girls instead. We used to never have to worry about bills and now its a daily concern. I think the biggest effect on our lives is just the sheer exhaustion my husband and I both experience. Georgia doesn't sleep much and requires a lot of care and we still have a "normal," healthy very active 3 year old to look after as well. While its not an easy life, we see Georgia as a huge blessing to our family. The peace she brings us is like having a little piece of heaven in our home. I know everything that has happened with Georgia happened for a reason. If I hadn't been told that she was going to die, I wouldn't appreciate her condition now. When people ask me how Georgia is doing I tell them "Great. For a baby who's supposed to be dead she's doing fantastic."

A typical day for Georgia begins very early. She wakes up at about 4:00 or 5:00 a.m (which to us is great because it used to be 3:00 or 4:00 but with Melatonin we get an extra hour). We don't get her out of bed until 7:00 so usually she lays in bed and squirms around and makes noises to try and get us to come in. She eats breakfast which consists of pureed baby food with all of her medications mixed in and a bottle. Miraculously Georgia eats all her food orally, she does not have a gtube. According to her brain scans she shouldn't be able to do this but she does. She loves food, all you have to do is say "cake" and she smiles. After breakfast I get her ready for school and the bus comes and gets her. She goes to a special school that is for kids with serious special needs. At school they do stretches, which lasts about an hour and a half, and her exercises, which is basically to help her learn to use her muscles and body, but she is also taught her colors and numbers and reading.  She also has physcial therapy and occupational therapy, speech and vision therapy at school. All of this used to be done by me in our home before she went to school. She gets home from school around noon and eats lunch and takes a nap. After her nap she plays with her sister and usually has additional therapy or doctor appointments. Our lives our ridiculously busy.

Eden absolutely loves Georgia and their relationship is the cutest thing ever. Eden first thing in the morning asks where her Georgia Peanut is (Georgia's nickname is Peanut). If Georgia is asleep Eden asks to wake her up. Eden is such a good sister, she loves to play with Georgia and gives her toys to play with. She also takes really good care of her, if someone gives Eden something, like a sticker or a toy, she asks for one for Georgia. Right now Eden is very into princesses, she loves Princess Aurora and calls herself Princess 'Rora, she says that Georgia is Cindrella. Whenever Eden plays dress up she gets the Cindrella dress and shoes and tells me to put them on Georgia. She likes to help feed Georgia too. Georgia loves Eden too, most of the time. Occassionally Eden will get too rough and Georgia will get annoyed but most of the time she tolerates her sisters "love." The cutest thing is when Georgia starts to cry Eden will give her "yellow blanket" (Eden's most prized possessions) and a toy to try and calm her down. I frequently find Georgia with yellow blanket over her face. They have a very special relationship. Georgia is mostly a pretty mellow kid. She only really screams when she is in pain. She loves to be held and cuddled, although she is getting more and more wiggly. When Georgia's dad gets home from work, she just beams. If he starts playing with Eden first, she will wiggle and make noises and yell to try and get to him. She loves to play games with her dad. Her favorite game is one where she throws her head down so she can get praise for trying to lift it back up. She could do it all day long and smiles like crazy when she plays her game. I worry that Georgia is bored because of her limitations. Most of her day is spent just sitting with me and playing with her sister. But I think she is happy and content. As for what my life is like, as you can imagine, its crazy and hectic and nothing like what I thought it would be. Raising twins is one thing, but then adding a special needs child into the equation makes it that much more difficult. I love my kids more than anything and I have the best husband in the world. Its not an easy life but its definitely worth it. Georgia only knows 2 words, "Ma" and "Home" but in one look I can tell that I am her whole world and she is mine and that's all I need. If you'd like to read more about Georgia and our family our blog is http://www.wagnermania.blogspot.com/.