He was born on November 25, 1998, the day before Thanksgiving. What a gift to be thankful for. Frederick George Place was everything that we had ever dreamed of. We never thought that a baby could be this beautiful. Our lives had changed forever. Due to a premature delivery, “Freddie” was in an out of the hospital much of his first month home. The day after we got him home we happened to bring him to the doctors for a
check. Thank god we did, he had a temperature of 94 degrees. They immediately admitted him to the hospital for testing. Because Freddie was also born a little jittery in the arms, they did many tests on him while he was in the hospital. They found nothing to be wrong. The doctors attributed these symptoms to a premature delivery. Being a first time mom and nervous about everything these jitters drove me to see a neurologist when Freddie was 6 weeks old. The neurologist did testing on him and discharged him with a clean bill of health, again a premature birth.

    In December, Freddie spent his first and only Christmas with both sets of Grandparents and all of his family around, a very memorable day for us.  He was an angel, slept most of the day, but enjoyed his waking hours.

    The jitters finally started going away and disappeared when Freddie was about 2 months

old. We finally felt at ease that our son was going to be O.K. Freddie was baptized on January 31, 1999 and started daycare on February 1, 1999. This was very tough leaving our little baby to go back to work. We knew that he would be O.K. though because I had known his daycare provider a long time. Freddie spent his First Valentines Day at his new daycare and came home with many cards from all of his friends J. We started
noticing eating problems around the end of February. We would send him to day care with 4 oz of formula to be given every 4 hours. The first few weeks the daycare provider noted to us that Freddie was only eating about 2-3 oz every 4 hours, We wrote it off to a cold or some other type of flu. He was also spitting up much of what he ate. This went into mid
March; this is when We started to worry. His eating habits were rapidly changing so that he was not even getting down 1/2 of what he should have been. We tried every type of formula imaginable. We thought that he might be lactose intolerant. He would eat O.K. for us at night, but it would take awhile to get it down and then at least 1/2 would come back up. About mid March we were told that much of the day at daycare Freddie would scream as if something was hurting him. Again we brought him to the doctors reporting that he wasn’t eating much and that he was crying a lot during the day, but he slept fine at night. We had concluded that he may just have colic.

    By Easter Freddie’s eating habits had really changed. He was only in the 5th percentile in his growth and weight. He was also starting to lose weight. He spent most of Easter sleeping. Every time we would try to put him on his stomach he would scream again as if something were hurting him. This worried us because we knew that a baby of 4 months of age should be able to at least try to lift their head if not try to roll over from front to back. He never liked being on his stomach. We were into the doctors at least 3 times that week having him checked for his eating problems. We were told that it was probably reflux. They did an upper GI and found that he did have reflux. At last an answer to our problems. He was put on Zantac and Maalox. A week later we were back into the doctors for his 5-month check up. The doctor mentioned to us that because of his poor muscle tone he would like to see Freddie get checked by a Neurologist for mild Cerebral Palsy. This was horrible. So we scheduled a month from then for a neurological appointment. It was going to be the longest month of our lives waiting to be seen. A few weeks later we got home late on a Sunday night after being at Grammy and Grampy’s all day. Freddie’s eating habits had gotten even worse and he was dropping weight rapidly. He went from 12 pounds to 11 pounds; this was not good since he had been in a low percentile as it was. That Sunday night when we got home we called Freddie’s doctor and explained that wewere still concerned about his weight loss and that he had not eaten at all that day. His doctor agreed that the following morning he could be admitted to Dartmouth Hitchcock Hospital in Hanover for testing.

    This was so hard bringing our baby up to a big hospital like Dartmouth but we knew that they were one of the best around. Freddie was admitted and immediately hooked up to all kinds of machines (we had seen all of this before the month after he was born, it immediately brought back lots of memories). They ran all kinds of tests on him. He constantly had people poking at him and taking blood from him. It was so hard to let our little baby be subjected to this but
hopefully they were going to find an answer. The night of his admittance, Freddie’s neurologist sat us down to question us. I was holding Freddie. I remember the neurologist asking us if Freddie always held him thumbs tucked in between his index finger and middle finger. We answered yes and the doctor just shook his head. We wanted to know what he was thinking. We wanted answers immediately. We were tired of waiting for test results. We asked the neurologist what he thought based on what he had already seen. His answer was that he had a 50/50 chance that it was some sort of Cerebral Palsy. They wouldn’t have answers until the MRI results were in the next day. Again more waiting for answers. I remembered sitting there crying watching a little boy in the hallway playing basketball. I was thinking that my son might never have this opportunity. Freddie had a wonderful neurologist who made sure to test for everything possible. Freddie was discharged a week later. The diagnosis was that the neurologist found a lack of myelin. We were informed that this is the insulation of the nerves in the brain. He did tell us that some premature babies are born with lower amounts of myelin, and he may grow some. He also told us that there were lots more tests that he was sending out. These would tell him if Freddie had a Neuro metabolic disorder. He said he just wanted to try and rule these out but the results would take at least a month on most of these tests. Freddie was put on Baclafin because of his muscle rigidity. I remember the first dose of Baclafin given to our little baby. I did not know how much more I could handle, I had to watch my baby be put on a drug that relaxed his body a little bit too much. He appeared drunk. This was so hard. We went home with Freddie at the end of that week. He was now on Zantac for reflux and Baclafin for his muscles. We got him home to his own house and I remember the three of us sitting outside, it was a nice spring day and Freddie was starting to take to the Baclafin a little better. All of a sudden our little baby smiled and cooed. We had not seen this in about a month. We were so excited, maybe there was light at the end of the tunnel. We spent much of the next month, being optimistic. If Freddie did have Cerebral Palsy, we were going to work with him a lot and make the best of it. We continued feeding him by bottle and were starting to give him baby food (just a little bit, but it must have tasted so good to him). It would take a long time to feed him and most would come back up and then we would have to start over, but we had all the time in the world for him. We were going to over come this! Our baby was going to live and that was what was important (Again being very optimistic).

    Three weeks later on a Friday I was at work and received a call from Dartmouth Hospital. “Kim we would like to schedule Freddie to come back up next week for more testing.” I remember asking if everything was O.K. They had received a test back that was questionable but I did not know what the test was. All I remember from that conversation is that “it could be a neuro metabolic condition and if it was some of them could be pretty nasty.” I hung up the phone and asked myself “what is a neuro metabolic condition?” and “how nasty is nasty?”. We went up to Dartmouth Hospital Monday morning. Poor little Freddie was poked with more needles and put through a spinal tap. We didn’t think that our hearts could break anymore, when is our baby going to be through all of these horrible tests that are hurting him? But we knew that in the long run we needed these tests done to have an answer. The spinal tap helped to prove the nightmare. That evening Freddie’s neurologist sat the whole family down to explain the diagnosis. “I am afraid your son has Krabbes disease”. We were all thinking, O.K. now we have a diagnosis, let’s get on with a cure for this. Then we were told that “this is a fatal disease.” My heart just sank to my stomach. This was absolutely the worst night of both of our lives. We were losing our baby. How could we possibly handle this. We were so scared. We did not sleep at all that night, tossing and turning looking for answers. “Why was this happening and how could this be happening to us?” The best thing that ever happened to us was now being taken away. It just was not fair! We did not leave Dartmouth this time until Freddie had surgery for a feeding tube. We were told that we would need this as things got worse and he couldn’t swallow anymore. He was also put on Ativan and Phenobarbital for seizure activity since we were told that this may increase as the disease progressed. Everything was now just a comfort measure.

    It took us a good few weeks to adjust to all of the new medications and nurses in and out of our house. We had decided that all we could do was make the best of it at this point and show our little baby all that we could in life during his short stay.

    It was now the end of June and we were

still trying to feed Freddie by bottle. It was getting more difficult, but we were still succeeding. We would let Freddie eat whatever he wanted at 6 months old. He was able to have little bits of baby food put onto his tongue so that he could taste different foods. We gave him a lollipop to try licking and he also loved Popsicle’s. We are so glad that we did this because just a few weeks later we were feeding Freddie everything through his feeding tube. This broke our hearts to think that our little boy could no longer taste the foods that he was eating, we would try to put different foods on our fingers and rub them inside his mouth, but this was the extent of it. At this point we were gravity feeding him. As this got more difficult we graduated to a feeding pump by July. He was continuously fed with this for a 24-hour period. Now he was putting on weight. Things were starting to look up again, his meds were all working great and he was eating well (via pump) and actually gaining weight.

    Our entire community threw Freddie a fundraiser dance in July. It was the most special event we have ever attended and it was all for Freddie. Over 500 people were there and tickets were sold out. This is such a special attribute to think that a baby who had never spoken a word in his life brought this many people together.

    In July we bought a hot tub for Freddie. This was recommended to us at a ULF conference, which we attended with Freddie in July. This was the best investment we could have made. His whole body would relax so much when he would go in it. The hot water and massaging relaxed all of his sore little muscles. We are so glad that other families recommended this.

    Freddie was still sleeping through the night in July, by the last week of July though this was

starting to change. Freddie started choking a lot because he could no longer swallow his secretions. This required constant suctioning with a suction bulb, which we were more than happy to do for him but again, it, broke our heart to see our little baby getting worse.

    In August things got even worse. I was home one day with Freddie when I noticed long pauses between his breaths. Of course I was scared to death and off we were again to the doctors. Freddie had developed apnea. We were informed that it might only be a couple of days now until the end. This was so hard to believe since only a month before we felt we had reached a nice little plateau with him. The end just could not be near yet! We had 24 hour nursing coverage at this point and his Phenobarbital was upped for his comfort level. We sat with little Freddie day and night and all we did was hold him and love him. How could this be it? He had not even gotten a chance to live. Then one day in August he took his last breath, so we thought, we called 911 immediately since we had decided to donate organs and he had to be put on life support to keep his organs. Well 911 got to the house; he had not pulse they started CPR and the little fighter came right back. He went from blue to bright pink in about 5 minutes. We were so excited to be able to have more time with our little one.

    We stayed in the hospital with Freddie another week while they monitored his apnea, again they felt the end was very near. We were too scared to go back home and be 30 miles away from the hospital with all of this going on. Besides Freddie’s doctor, neurologist, and all of the other medical staff involved with him had been so wonderful that we felt a “comfort level” being near medical help. After a week at the hospital we got Freddie admitted to Hospice House. This was both a relief and a big fear at the same time. We were happy to have many nurses just a call away and the hospital and the clinic both just a stone throw away. For the first time in months, we felt “safe”. Yet at the same time, we knew that Hospice meant the end and that was very hard to handle. We lived at Hospice with Freddie for 2 months taking him home on weekends to do family things like apple picking and to the pumpkin patch. We found that the feeding pump was portable and so were his meds therefore we were still trying to cram as much as we could into a short amount of time. Which we now have no regrets about. It was late October. Freddie had surprised the doctors and each time they thought the end was near he would prove everybody wrong. Freddie came down with pneumonia again, which was now becoming a common occurrence. This time the doctor was stumped we all thought that he would get through it. He had been through every holiday now except Halloween and his First Birthday, we were all hoping he would make it. October 28th was a bad day, Freddie had been having difficulty breathing we stayed up all night with him and the following morning October 29th Freddie saw his first Halloween parade, well this is as close as he was going to get to seeing Halloween we lost our little baby that morning. He had struggled hard enough and just could not do it any longer. Now our little angel looks over us. He is in no more pain and the only thing left are the painful memories of this horrible disease. Hopefully someday they will find a cure for this!

Return to Krabbe's Kids