Lila's Story   — Jessica Winegeart, OK, USA

WE ARE EXTREMELY LUCKY AND BLESSED!!!! On September 29, 2008 at 7:58 am I gave birth to a beautiful baby girl weighing in at 7lbs 6 oz and 20 inches. I was induced because of high blood pressure and had arrived at the hospital the night before to start the induction. I had tested GBS positive and therefore I was also started on IV antibiotics at this time. I received approximately 2 1/2 rounds of antibiotic before Lila was born. My water was only broken for approximately 3 hours before delivery. The delivery went fairly smoothly. It was quick and painless (thanks to the epidural!!) The cord was wrapped around her neck, but my OB knew just what to do and with the help of forceps he had her out in a flash. She was perfect!! At this time she showed no sign of illness. When Lila was 6 weeks old she started running a fever. I called the pediatrician and the nurse said to give her Tylenol and watch her. I did and her fever temporarily broke. She was acting normal that day and feeding just fine. Around the time my husband came home from work at about 5:00pm she took a turn. Her fever came back and she was acting lethargic. At the time I didn't know that though. As a first time mother I just thought that she was sleepy because she didn't feel good. I watched her closely for the next few hours and then my maternal instincts kicked in and I started taking this all very seriously. I called the doctor again and she told us to go directly to the emergency room at Integris Baptist in Oklahoma City. We were there by 9:00. Lila's temp was 103.3 when we arrived. They started tests immediately. They started her on an IV but I can’t remember at this point what they were giving her. It was either antibiotics or just fluid. She was so sick and unresponsive at this point that as they were digging around trying to find her tiny little vein she did not even cry! Everything came back good so the next step was a spinal tap. They let us stay in the room for the procedure. She didn’t cry for this procedure either. I didn’t know what to think about that. If I had known how bad of a sign that was I probably would have lost it. At first they came back in and told us that her tap came back good. Shortly after that they came in and said there had been a mix-up with the results and she did in fact test positive for meningitis. We were so scared. From there they admitted her to a room in Pediatrics. Shortly after being admitted they took her to the lab to draw blood. I went with her and while we were there she had her first seizure. I would not have known that she was having one. Thank God we were already at the hospital. I expected a seizure to look like it does in an adult. It doesn’t look this way in a newborn. From this point the nurse called my pediatrician who had just left the hospital checking on Lila to go to her clinic to start the day. She told the nurse to call the Intensivist in the PICU. That is when Dr. Griggs came right over. He was the Head of the PICU and from that point on he took over care of our daughter. As soon as he saw her he asked me if her skin always looked the way it did right then--mottled. I didn’t really know the answer. Yes, it did to an extent. My husband’s skin does the same thing when he is cold so I thought it was normal. I had no idea what this meant. Dr. Griggs did though he also recognized the signs that she was in respiratory distress. He immediately rushed her to the PICU. My husband and I got to follow her over but were not allowed in at this point. They sent us back to the room in Pediatrics to wait. After approximately 30 minutes, although it seemed like forever, a counselor and nurse from the PICU came to speak with us. It was then that we learned they were putting her on life support. They tried to explain that it was not necessarily to sustain her life at this point but that she was having trouble doing all that her body was requiring of her and that the life support would help her to fight the illness. These women tried really hard to prepare us for what we would see when we finally got to see Lila. She had been intubated, been placed on a feeding tube, and a main line was placed in her leg vein. They were using the main line to give her two forms of strong antibiotics and seizure medication. They also had her sedated. She looked really pitiful! As hard as it was to see my daughter like that I was just glad that I got to be with her. The blood work had come back and it showed that her white blood count was extremely low--a sign that her body was giving up and didn’t have what it needed to fight. She needed a blood transfusion. After the transfusion she pinked up a bit. All we could do at this point was wait. Dr. Griggs took us in the conference room and explained to us that if on a scale of 1 -10, 10 being the sickest a baby could be that Lila was currently at a 9 and if she didn’t level out there that “we may very well lose this baby." Lucky for us Lila is a fighter. She did level out. She required another blood transfusion and they did see some more seizure activity, but she was hanging in. The results from the lab also came back and allowed the doctors to pull her off one of the antibiotics. Lucky for us her culture was most susceptible to the antibiotic that was easier on her overall. This was great because the more time she spent on the hard one the more likely we were to see deafness and blindness. After she had stabilized some they bagged her and took her down for an MRI. I can’t explain to you how scared we were walking along side our tiny daughter who is hooked up to all these tubes and there is a man pumping a bag to breath for her. I remember the way people looked at us. You could tell they felt for us. Her previous CAT scans had showed that there was swelling on her brain but the extent was unknown. When the Neurologist came with the results she was holding back tears. She said that there was “significant damage”. My husband broke down hearing these words. I was surprisingly okay with that. I knew at this point she was going to live and that is all I cared about. I just wanted more answers. I wanted to know what that meant. There weren’t many answers to be found. In a newborn it is unknown how much they will be affected. She said that it could be anywhere from her not walking or being able to feed herself to a minor learning disability. They were also still concerned about seizures. I convinced them to leave her on an EEG overnight to have more data to work with. I wanted her to have seizure-like actively while hooked up so we could know whether or not it was in fact a seizure. That night the nurse thought she had a seizure but the EEG proved that see didn’t. This was really important because if she had to be on seizure medication it would have affected her in ways that we didn’t want. We were lucky. She was able to be taken of the seizure medication and never had another seizure. A few days later she started taking breaths over the machines and a few days after that they took her off the breathing machine. Dr. Griggs told us it was really important to keep her calm because if she got worked up she would probably have to be reintubated. So we did everything in our power to soothe her. We sang to her and talked to her continuously that day. IT WORKED!! A few days later she got to leave the PICU and go back to the room in which we had started in Pediatrics. This was a huge milestone. She continued to improve. They did a hearing test and we were happy to learn that her hearing had not been affected. We were released on Thanksgiving Day!! That was the best Thanksgiving we will ever have!! I took her to see an ophthalmologist within a week and he was happy to tell us that it appeared her vision had also remained unaffected. At this point the only question left was what her Neurologist; Dr. Norman, would say when I took her in a month after being discharged, she was all smiles. She said that she was doing great and she didn’t expect to see any problems with Lila. She was right. In late January she was evaluated to see how she was developing. Not only did she not have any delays she was ahead of her age in most areas. She stared crawling at around 6 months and started walking on July 7, 2009. Just one week after turning 9 months old. She is AWESOME!! She is a very happy baby. She just turned 1 a few weeks ago. She is a sweet blonde-haired, blue-eyed girl. She is yet to see a delay and is very healthy. We are very lucky!! I found this website yesterday while I was doing GBS research. My sister had her GBS test yesterday with her first child and I am a little scared. When I started reading the late-onset stories I just wanted to see how others like Lila were doing. As I read story after story of babies that didn’t make it I became very upset. I literally made myself physically ill and had to leave work. I thought it was important that I share my story so that anyone who goes through this knows that there is hope. My prayers are with all of those that have lost their precious babies, those whose babies were forever altered, and those who are forced to walk the same road. I hope you can find comfort in Lila’s story.