Our Little Princess:
This is the story of our little princess Mikkey Wilhelmina Aaltje Timmer, we called her Mikkey. On June 11th, 1999 our little girl Mikkey was born. I had a wonderful pregnancy. Mikkey is our first child. She weighted 2500 grams, a little small, but a beautiful girl that made us so happy. I breastfed her for a couple of months but she didn’t grow enough so I started to give her a bottle. We were so proud of our little princess. When she was four months old she had what we thought was a cold. She started coughing a bit and I went to the doctor with her. He thought that she had bronchitis and he gave us some penicillin. After a couple of weeks she was still coughing and also had a fever. Because it was autumn I didn’t go out with her. She also had little red/brown spots on her face and on her chest. I went to the doctor again and told him that she wasn’t doing better in spite of the penicillin. He had no idea and said that she was probably a very sensitive girl who could easily get a cold. After 5 visits to different doctors in 8 weeks of time I told my doctor that I wanted to go to the children’s doctor at the hospital. Our little princess was still coughing, and we could hear her breathing from a distance. She already had 3 prescriptions of penicillin and had not recovered. She had problems with growing and she didn’t like to eat anything but milk.
In the first week of January 2000 we went to the hospital in our town. We had doubts about Mikkey’s well feeling and we were very worried. Mikkey started crossing her eyes also, almost in a couple of day’s time. She made us so very happy and we wanted so badly that she would be a healthy and happy baby. Three days after our visit to the children’s doctor we went by ambulance to the hospital again. Mikkey had severe problems with breathing. After a couple of weeks in the hospital she was diagnosed with influenza. We were so relieved. This was nothing serious and the virus would eventually disappear. From that moment on we also fed her through a sonde in her nose. She still didn’t grow and stayed a little sick girl. The doctors told us the she needed time to get better. They also thought that our little princess had a narrow airway that could be the reason for her problems with breathing. To be sure about this, it was necessary that the doctors perform a bronchoscope. If a narrow airway was the cause of some of her problems the only cure for Mikkey was to grow out of it. The bronchoscope could not be done in this hospital so Mikkey was moved to a hospital in another town.
We were happy because this was a bigger hospital and we hoped that they also had more knowledge. It was the end of February. On Monday we moved to the other hospital. Mikkey would have the bronchoscope on Tuesday. That morning she had severe breathing problems. Immediately there were doctors and nurses around us. One of the doctors who observed and helped her said that she thought that there was something very wrong with Mikkey’s health. They cancelled the bronchoscope immediately and they transferred Mikkey from the medium care to the special care unit. The doctors had no idea where to begin so they started to examine everything. Mikkey was now 7 months old. Although she had been sick for 3.5 months she was a very happy baby who loved to laugh. She reacted so beautifully to all the songs we sang for her; we loved her deeply. We stayed in the hospital day and night. And we were so frightened. After ten days in this hospital on March 7th, we heard the terrible news. Mikkey was diagnosed with Type 2 Gaucher disease. This was a very, very bad prognosis. Our world collapsed. This little precious beautiful baby had to die? Our princess who made us so very happy could not stay with us?
The doctors were very clear. Type 2 Gaucher disease is very serious, and there is no cure. Our daughter would not grow up and would probably die before she was 2 years old. They also told us that her brain is affected, and the neurological impact of the disease would kill her. Her liver and her spleen were already very large and they were still growing. They said that it was very plausible that there would come a time that Mikkey wouldn’t recognise us and that her mental condition would become very bad. We wanted to know in which stage Mikkey’s disease was and how long we still could enjoy her. But the doctors could not give us answers. They had no idea. We cried every day.
In the meantime Mikkey had breathing problems 2 or 3 times a week. We had to suck her mouth and her throat with a machine. We also gave her extra oxygen when she needed it. She received medicines, supplemental nutrition to grow, and antibiotics due to the risk of infection. She also received a few medicines what would make her breathing easier and she still got all her meals through her nose. When Mikkey was 4.5 months old I started to give her fruit and vegetables in addition to milk. At that time she didn’t like anything. She hated it. So I discontinued this assuming there would be time to introduce solid foods at a later time. As it turned out, the only food she ever ate was the milk through her nose. The doctors also thought that it could be dangerous for her to drink out of a bottle because there was a possibility she wouldn’t swallow the milk correctly. Prior to her breathing problems she was a very happy girl, laughed a lot and everybody fell in love with her. She was so special. She was our everything.
Two weeks after we received the diagnose we wanted to take Mikkey home. We wanted the best quality in the rest of her life, at home. So we went home. The nurses in the hospital had coached us so we could do all the treatments she needed by ourselves. The first couple of days we were a bit nervous. What if she had severe problems with the breathing? Were we able to help her adequately? Were we capable enough to help when she was in need? We had four tanks of oxygen at home, a lot of medicine, a machine that made it possible to suck her throat, and a feeding-pump. We loved it at home. We played all day with her, we sang for her and we gave her all the love and affection we could give. She returned all the love she could give. These days were very intense. We coddled and pampered Mikkey, we stroke her, and held her. We knew that we had to cherish every moment we had with her. And we did.
These days at home were so important to us; we enjoyed every minute in an hour, 24 hours per day. After a week it seemed that we could handle the situation. At first we were very afraid to go out with her because there was always the possibility the she would have problems with breathing. But my husband GeertJan and I seemed to be a good team and we both knew what to do when Mikkey had problems. We both stayed with her 24 hours a day. It was not possible for one of us to go away because Mikkey needed four hands when she had problems. Two times we went for a drive. GeertJan was in the backseat next to Mikkey with all the equipment in case of emergency. I drove. There was one thing we wanted to do so much with her. We wanted to go to the zoo. We never got there.
Exactly two weeks after we arrived home Mikkey had trouble breathing. On a Wednesday morning her breathing became so difficult, we could not help her anymore. It was terrifying. She seemed to be in a coma and did not react or respond. In the meantime GeertJan had called for an ambulance. The ambulance came very quickly, thank God, and they took us to the hospital. In the hospital the trauma team put a tube in Mikkey’s throat so the machine would breath for her. This was in the hospital in our town again. There were a couple of frightening hours that followed. The Doctor informed us that doctors were on their way from the other hospital. Mikkey need to be in an intensive care unit. We were relieved because the other hospital knew Mikkey and were now familiar with Gaucher disease. Upon arrival we were so glad that she was still alive. It was terrible to see her on all the machines, and the needles in her hands and feet to give her medicine and so on. At that moment, for the first time, we realised that Mikkey was very ill. Because she was so cheerful and glad and she still laughed so much we hoped that her sickness was in its first stage. Now we knew that this was not the case.
After a couple of days the doctors came to us and asked if we would agree that they perform the bronchoscope. This would be very easy because the camera could go through the tube she already had, and thus not cause any additional breathing problems. We agreed. It was then that we saw on the screen that the Gaucher disease was not only visible in her liver and spleen, but also in her airway. This complicated her breathing, thus being the most immediate and serious of her symptoms. This was the moment we became very frightened. Now, for the first time, we could see that our little girl was a very, very sick girl. It was something we knew deep down inside, but we clung to hope. We hoped that we could spend at least a few months or 1 year with her. But we fooled ourselves. In the intensive care unit they put Mikkey in a larger bed so I could lie next to her and hold her, sing for her and comfort her.
After another couple of days the doctors told us that they wanted to get the tube out. They did so, and Mikkey recovered. Remarkably. We were so glad. Our little girl, our fighter had done it again! However, she had suffered so much, we noticed that she was now less enthusiastic. We felt so much compassion for her. And we loved her so much!
Mikkey went from the intensive care to the special care and step-by-step she got better. We wanted to go home again. Mikkey needed oxygen 24 hours per day and she needed the milk 24 hours a day (instead of 5 feedings) but we could handle that. So we were waiting on the moment that we could go home.
Three days later, on April 26th we were awakened at 04.45 hours in the morning. Mikkey was not OK. Mikkey had a very severe breathing problem and was not doing well. The doctor told me to put Mikkey on my lap. We could not seem to wake her. Her eyes were closed and she was in a terrifying situation. She also had a very high fever. We were so scared. She needed oxygen not only through her nose but also through her mouth so we held a balloon for her mouth all the time. The entire day we had her on our laps. She was so sick. The fever became worse and she seemed to be in a coma the entire time. We sang to her, talked to her, thanked her and said goodbye to her. The next night at 01.15 hours, Mikkey died in our arms. She had given all that she could, but she could not win the battle. Our little princess. The love of our lives.
Seven weeks after we heard about this terrible Gaucher disease our daughter died. Mikkey was ten months and sixteen days old. Mikkey Wilhelmina Aaltje Timmer. That was her name. For always written in our thoughts and in our hearts.