Our Story- From Birth to Diagnoses
I would like to share our adventure with our son Aschdon. From the day I found out I was pregnant until the moment he was diagnosed, I knew that my child was going to be special. Now I know some people will think "Yeah right" but I really did. Like some moms will know if they will have a boy or girl, I knew that my son was going to be different. What I didn't know was how hard it would be to have doctors agree with me and find out what was wrong.
When I found out I was pregnant with my third child I was very happy. At the time I was working at a fast food place. My husband, Richard, was just as thrilled as he still wanted a son. Since I already had a daughter from a previous marriage and a daughter from my present marriage to Richard we both were hoping for a boy. Nothing seemed odd about the pregnancy. I had the morning sickness the tiredness ya know all the stuff that goes along with it. In April I was at work and felt weird all of a sudden. That is the best way to describe it as I just felt like something was wrong. I took a lunch break hoping that would help but when it didn't I knew I had to go to the doctors.
When I got there the doctor checked and I was dilated to 2, which of course put me in a panic because my baby wasn't due until June 27 and this was way too early to have him. I hadn't known but the doctor next told me that I was going to have this baby early and he had a feeling since the beginning. He started me on steroid shots which I was to get twice a week until I had the baby. The reason for the shots were to help the lungs develop a bit faster so he wouldn't have to stay in the hospital long. I was also on some medication to help the contractions stop but can't remember the name of them. He also gave me a note saying I was not to work any more due to high risk pregnancy.
I proceeded to bring that back to my work and hand it to my boss. She read it and started laughing. That in itself was a slap to the face because I had been used to working up until I had my baby with the other two kids of mine, then she preceded to look at me and say "You had the doctor write you a note so you don't have to work? What kind of an excuse is this?" As you can imagine I was furious and quit right then and there. My children come first and that was that. So started the boring days at home sitting on the couch doing latching hooks. I was even ordered not to pick up my littlest one because it could start the labor. Twice a week I went to the hospital for my shots where each time I got the new nurse who needed to practice. Needless to say some of them hurt especially considering they had to be given to me in my hip.
A month went by in which we had moved into a new house and was just waiting and worrying about our unborn child. On May 7, 1999 at 6:00 in the morning I woke to cramping- well contractions. They weren't steady and not to bad so I went back to sleep. At 8:00 am I woke up with a really bad pain in my abdomen and went into the bathroom. There is were I started bleeding. Not heavy but I knew that was not part of a regular person going into labor. I called up at the hospital and they told me to come in just so they could check me but it probably wasn't anything to worry about as lots of women spot when they are pregnant. I woke up Richard and we drove the kids over to my moms house and went to the hospital. By that time, I was hurting and in pain and it was on top of having contractions. I had never had back labor but I knew this was it.
The nurse hooked me up to the machine to check contractions. After awhile of waiting she said that I wasn't having any and that I would probably just go home. They couldn't check me because of the fact I was bleeding so I had to wait for the doctor. More time went by and I kept trying to tell the nurse (who was supposed to be the head nurse there) that I was in labor and that I was going to have this baby. She basically ignored me and told me that the doctor would check on me when he came up around noon. It was about 10:30 at this time and lucky me the doctor showed up early. I had an ultrasound done due to the bleeding and it showed my babies head in the birth canal (I can tell you it was kind of neat as I liked watching my other ultrasounds and to actually see my body and the baby like that was amazing). He looked at me did a check and told me I was going to have this baby today. I just looked at him and asked if I could have some medicine because it hurt so bad I didn't think I could do it. The doctor said that the worst is over because I was dilated to 8 and it wouldn't be long. In fact he said he was going to go back to the office for a minute and come back in about a half an hour. No sooner was he out the door when I knew the baby was coming. My husband had to rush and find a nurse to find the doctor. They wheeled me in the delivery room where there were lots of nurses the baby doctor and machines because he was so early.
I remember as the doctor walked in I was ready to push. He told me to go and ahead and I did. In one push I was able to deliver my son. At 11:15am Aschdon Lorenz Birklewas born. My husband cut the cord and because he looked okay they tried to hand him to me. I nicely refused and the nurse turned around and said "No the mom needs to hold the baby so they can bond" I remember looking at Richard and pleading with him to not let me hold him because I hurt so bad I was afraid I was going to drop him. But the nurse was persistent and handed me my son (at the time I didn't even hear if we had a boy or girl) and I about dropped him because I was so weak. We found out later the reason for the early birth was due to the placenta tearing away from the side of the uterus. Man that is one thing I would never want to experience again.
Aschdon was whisked away to all the nurses and his doctor. He had an Apgar score of 9 which I thought was good for a preemie. Aschdon weighed 3 pounds and 13 ounces and was only 15 inches long. They put him in a warmer with a little oxygen tent thing over him. We were lucky as he only had to stay in the hospital for a week. Basically he had to learn how to eat and we had to learn how to keep him temperature regulated. At discharge the nurse gave me instructions like I was a new mom and put on the paper I was a new mom. Made me wonder who had my other two for me?
At home, we had a community nurse come to our house once a week to check his weight and to see how he was doing. At that time our only concerns were that he didn't cry when he was hungry or needed a change. We had to guess when to feed him and so on. Aschdon slept on an electric blanket that was covered by another blanket- that way we could keep his temperature correct. As he got older he was doing pretty good besides that slight tremor he had since birth but no one took notice of it. Aschdon could roll over, he couldn't lift his head very well but otherwise seemed to be a healthy baby. He was given the RSV shot since he was high risk being a preemie and so small.
Around 7 months old he got a cold which after a few days got worse to where I couldn't get his fever to go down. I brought him to the hospital and they told me to give him Tylenol then motrin and have him get rest. After another two days I couldn't take it any more. My son was not really moving or being him. I brought him back to the emergency room where this wonderful male nurse took one look at him and whisked him away. He started an IV and got his saturation's and vital signs. I was told he had pneumonia and had to be hospitalized. At this time I was working at the post office and had to call in to work so I could be there for my son. Thank God I was there too. The first night that I was there the nurses let his IV run dry four times, they neglected to bring clean diapers or anything that he might need. I was so mad, and that is to put it nicely. The next two days went the same. My son was in an oxygen tent with an IV and I was not allowed to touch him or comfort him when he cried because they said that was the rule. I finally got in touch with my sons doctor and told him of the poor care my son was getting. He immediately wrote a script for a nebulizer and some other medications. He said it was pointless to have him at the hospital when I was doing the work.
After a week or so my son got well but was never the same. He lost the ability to stand when holding on to your fingers, he could no longer lift his head up at all. He was able to sit in a sitting position if put in that position but he could not do it himself. He had lost weight from being sick and was only about 12 pounds. I took him to the doctor over and over again mainly for earaches and for the lack of weight but I heard the same thing over and over again. He was a preemie he will catch up in his own time. He was put on pediasure at 8 months old. That boosted his weight from 12 to almost 15 where it stopped.
In August of 2000 we moved to a new town and was directed to a children's doctor in Cheyenne. We made an appointment to see him. I thought he was great at first. He looked over him really well, seemed like he took me seriously and so on. But after it got to appointment after appointment where he would say the same thing as the other doctors that he would catch up. Some preemies take longer than other. I stated to him that at 15 months he should be doing something and he wasn't. He didn't have the strength to. Aschdon still had the tremors at this time also. I had commented on his lack of weight and such but that didn't seem to matter. My son was diagnosed at that time with failure to thrive, developmental delays, and hypotonia. Hypotonia? That was a scary word to me. I found a support group on the internet for parents with hypotonic babies. It was the best thing for me. Why? Because hypotonia is not a diagnosis, it is a symptom but doctors use it to diagnose patients. I am have made many new friends on this list and they have helped me through my doctor fighting times.
In January of 2001, I was fed up with it. I could not stand the doctor not doing anything for my son. At times in appointments he would even refer to my son as a girl. I got to thinking what kind of a doctor is he to not know the sex of the patient. I got my mean mom hat on and started demanding things get done. At first all I got from him was well if he had this it would be so rare or if he had this it just isn't possible. I then flat out told him I wanted tests done or I would go some where else. Low and behold we got an appointment to see the Developmental Specialist out of Denver. He travels to Cheyenne to do some Wyoming Appointments. He was great to talk to.
It was the first doctor to tell me that there is definitely something wrong. He told me that he has no reflexes, that he is really floppy (which I already knew) but nothing was wrong with mental capacity. All this while my son had been having earaches and was on medication after another, this doc looked at his ears and said there was some scarring due to the earaches and that we might think about getting tubes in. This doctor ordered a blood test (complete cpc), a sweat test, a swallow test, a chest z-ray ( to rule out child lung cancer) and an MRI. I was so happy to hear all of this. But as our luck goes that other doctor would only order the blood test, and chest x-ray. He said the rest was not necessary. It was a start so we got them done and they all came back fine. So I told him that we needed the MRI and the sweat test. We got that done and everything came back fine.
So then I asked if there was anything else we could try and he said we could go to the muscle clinic but it probably come back fine. He wouldn't do it so I went to another doctor who brought him in front of the medical board for my sons sake and got us an appointment in Denver at the muscle clinic. It was a couple of months away but at least it was getting done. That February Aschdon got pneumonia again and was again hospitalized for three days. The people at this hospital were wonderful. I was allowed to crawl in there with my son to calm him down or just to play. They were just a lot better. After three days they let us take him home basically because we had the equipment at home and knew how to do it. But again Aschdon was weak after this. While waiting for our appointment I had gotten a hold of the notes from the doctor in Cheyenne and learned that he had planned on turning us in for neglect because of my sons weight and lack of eating. I had given him three different dairies of his eating habits and somehow he had never received them. I was hot. Why would I bring my kid to the doctor over and over again with the same problems if I was neglecting him. The doctor also had in his notes that my son was a girl in some areas, that my son could crawl, walk, which none or which my son has never done. I have been told I have grounds to sue but I see no point in it as I am not out for money I am out to help my son.
Then came May, and the muscle clinic. They were wonderful. Within 5 minutes they found my son had his hip out of his socket about half way, his droopy eye he had since birth was due to his muscle tone, and finally some one took notice of his tremor. I went in that day with having no idea what was wrong and came out with lots of information. There were some blood tests that they wanted to run before they would give me an exact answer but they had told me that they thought it was SMA. I told them I had read about it when I was looking up muscular dystrophies so I kinda had an idea what it was. When I went home and looked it up I was reading about the different types. Type 1 didn't sound like Aschdon. He was able to do more things than what they had written and type 3 well that was ruled out because of his age. I read type 2 and it was like reading about my son. What he could do and what he couldn't do. Unfortunately there was no other information on type 2.
Waiting for the results were horrible. The blood work came back a couple of weeks later but unfortunately the lab sent the wrong kind of blood to do the SMA test so we had to get more blood drawn from Aschdon. I felt awful as he has been poked and prodded so many times I didn't want to do it again.
SO in August of 2001 we got the results. He has SMA Type 2. I cried and my husband cried along with me. From what I had read my son didn't have much of a life expectancy or much of a life at all. We talked to the people in Denver and they answered all of our questions the best they could. I was saddened but I was so relieved to finally know what was wrong with my son. All through fighting for him I never cried, when I found out I cried, and when I found out what might happen to him in the future I cried but I never once cried because something was wrong with him. I believe God picks parents that are strong and have the love to give to a child that needs the extra love and attention. I look at Aschdon as my gift. He has taught me many things about life. I know he has taught my daughters to be compassionate and non-judgmental. God believes in me enough to give Aschdon the kind of life he deserves and I am more than happy to do it. My family and I have had to make adjustments in our life and in our routines and people criticize me for some of the things I do, but I know I am doing the best that I know how for my family. Richard and I have made it possible for me to stay home and raise the kids. We have to go without some of the extras other families have but I believe that it is worth every penny we don't have. I thank you for reading about my son and apologize for any choppiness. After all, it has been almost three years since he was born and even being the mom I am, I forget things too!!