Our story begins when our little girl, Adeline, was born on December 13, 2002. She came into our world looking like a little angel: lots of dark brown hair, dark brown eyes and weighed 6lbs. 11 ounces and was 18 1/2 inches long. I had taken a breast feeding class during my pregnancy and had heard about all of its benefits and thought that would be best for our child, so right away I tried, but helplessly it did not work out. The day before Christmas, December 24th, she started not feeding well, but my pediatrician’s office said it was probably because I switched from feeding her with the syringes to a bottle. At 14 days old, December 27th, I took her for her 2-week check-up and that’s when our trauma began. The pediatrician told me that she must have some type of infection because her temperature was 95.3. Little did I know what we were about to face. He did a spinal tap, administered antibiotics, and sent us straight to the hospital’s E.R. My husband met us at the doctor’s office and rode with us. There at Thibodaux Regional Medical Center, they put us in a regular room and tried to take blood. After several times of being unsuccessful, they told us they were going to move her into the ICU to watch her more closely. I thought to myself, how nice and cautious of them. I did not yet realize the degree of her illness. A few hours later, the diagnosis came. She had meningitis. Meningitis? I had heard of it, but didn’t know much about it. Where were the signs? Why didn’t I realize she was sick? Everybody told me how lucky I was that I had such a good baby that slept a lot. Where did she get this from? Did I give it to her during the delivery? What did we need to do to make her well?
After 7 hours of being in the hospital at her side, and after talks of possibly transferring her to another hospital near-by that was better equipped for infants her age, the nurses told me to take a break (and I had to express some milk, even though she had never really nursed, she was still getting my milk and it was way past time). After about 10 minutes, a nurse came to get me and said she had a seizure, stopped breathing and that they were working on her. What? Working on her? I could not believe my ears. The scene I saw when I walked into that room is a sight that will never be erased from my mind. Just about that time is when my mom and dad showed up at the hospital, unbeknown to them how serious Adeline’s condition was. The look in my mom and dad’s eyes when I told them “she isn’t doing too good” was one of shock. I hadn’t wanted to worry my mom and had not even told them she was in ICU. Something I will always regret. I also hadn’t realized myself, how bad off she was. I felt so bad, bad for them, for me, for us.
After the team resuscitated her, I felt it was time to call in a priest. One from a neighboring church came to baptize her. When I saw him turn to the page “prayer for the dying” I think I nearly fainted. My child was not dying, she was severely sick, but not dying. What did he know? I thought. Then after more contemplation, I thought maybe the nurses and doctors told him something that they hadn’t told us. Was she actually dying in front of my eyes? I could not believe we were baptizing my child in case she dies. We had only had 14 short days with her. Then the doctor told me she would be air-flighted to Ochner’s Hospital in New Orleans. It seemed like forever waiting for them to arrive and take her, but then a tough decision had to be made. Would I ride with her in the helicopter? The flight response team told me they didn’t need two patients on board, which I couldn’t even figure out what they meant until my pediatrician said (after me asking him for his professional opinion), “I don’t know if you could handle it if something happened to her.” What? Was she still in that critical of a condition? What a strenuous decision. After crying many more tears, my family made the decision for me. I should ride in our car with my husband and pray and hope for the best. That hour drive to the hospital was one I will never forget. We even got stopped at a D.W.I. check point on the way there. When we got there my sister, her husband, my brother in law, and his wife were already there. They said they were waiting for Adeline to arrive. I didn’t want to know the answer to the question I was thinking. Did she make it? Was my precious little girl alive? Yes, she was. She had made it to the hospital. The next 24-48 hours were going to be extremely critical. That’s what we were told. I must have been a zombie for the next 2 days. I tried to eat and did a little, but I was an emotional basket case. Every person that came to visit made me cry. Every visit with my sweet little innocent daughter made me cry even more.
After two gut wrenching weeks in that hospital, after CAT scans, MRI’s, and many other gruesome tests, we got to take our precious baby home. She had even begun to nurse at 3 ½ weeks old. What a horrible ordeal we had been through. And I still had so many questions. How did she acquire this? Was it from me? Was it someone who had a cold and came to visit after she was born? What damage has been done to her, to her brain? They couldn’t even give me a definite on if it was bacterial or viral meningitis. Why did this happen to us? What did we do to deserve this? Was this a test of what was to follow? Several of these questions weren’t answered and will probably never be answered.
The next several weeks at home went well. Adeline seemed to be growing and appeared to be healthy. For goodness sakes, what else could we possibly go through with our young child again so soon? But our story doesn’t end there. At her 4-month checkup, our pediatrician referred us to a neurosurgeon for a consultation. It appeared that her head size was a little large for her age. What did that mean? Nobody told me to look for signs of swelling in her brain. So, we went to Children’s Hospital in New Orleans on Holy Thursday. Another trip I will never forget. There they measured the size of my head and my husband’s head and told us that they were both slightly above the average line on the charts. See? My beautiful daughter just has a big head, is what I thought. We can deal with that because I didn’t know if I could handle anything else, mentally or physically. I asked the neurosurgeon what would happen if something was wrong with her head and he started off by saying that they would have to drill a hole in the side of her head and….. What? He lost me right there. Drill a hole in the side of her head? Are you kidding me? No way would she possibly need whatever type of brain surgery he was trying to explain to us. The only other thing I could think of to ask at that time was when would they take out this thing (later explained as a shunt) that they might implant in her head. Never was the answer we got. Never? She would have this metal object in her head for the rest of her life? After going through more tests, the radiologist told us something we dreaded hearing. Her ventricles in her head appeared to be slightly larger than normal. That was all he could tell us. Someone would be in touch with us soon. On the ride home that day, I knew it was not going to be good news. Although my husband was trying to be optimistic and keep me in good spirits, I felt in my heart that she would need this surgery. The next morning on Good Friday, we got the call. She would need the surgery. Okay, now I had lots of questions to ask. After getting the answers to many of our questions, we were told the surgery would be the next Wednesday. The next few days were painful. I could not believe we were going through such an ordeal again.
The day of the surgery we left our house way before daylight, followed by both sides of our families. Here we go again, I thought as they told us they couldn’t get blood from her. Two more people tried and when their attempts also failed, they reported to us that they would have to put her asleep, check her levels, and if they were okay, then proceed with the surgery.
Her surgery lasted a painstaking hour and a half. Someone came out in the middle to give us a report and said so far things were going smoothly. She made it through the surgery and we only stayed in the hospital for three days. We celebrated my 30th birthday during that visit too. Would this be the end of her medical disasters? Would she need shunt revision surgery? (which almost all children need at some point down the road) When would she need it? I did not know the answer to those questions and it was killing me.
She’s done well since her surgery. She is classified as developmentally delayed, was a “late bloomer” and had to begin physical and occupational therapy at 6 months old. She started speech therapy at about 11 months old and still has an infant toddler teacher come to our house weekly to make sure she is reaching the appropriate developmental milestones; but, she is doing better. Better than the doctors thought she would be doing and that’s what counts. Shortly after our horrific experience, my best friend told me she couldn’t believe all of this happened to us. She said I had always been so lucky. I remember feeling sorry for myself, for my child, for my husband, and for my family, that we had been put through this. I still wonder “why me?” sometimes. It was not until several months later when that same best friend lost her newborn son at 10 days old to a rare heart condition, did I change my outlook on our horrible ordeal. Unlucky? We were some of the luckiest people ever. Yes. We went through something tragic, something that is not over. We will have to continue to monitor her and her shunt, her whole life, but we have our child. She is here with us and that makes us the some of the luckiest people in the world!