On Feb 6, 2000 we found out that we were expecting our second child. I went for my first ultrasound on April 14, the doctor said everything looked fine and that we could expect the baby around Oct 13. When we got home that day we told our 4 year old son Ryan that he was going to be a big brother, he was so excited. In the months that followed at every doctor visit I was told everything was normal, the baby was growing and moving fine. On May 30,2000 I went for a level II ultrasound, which gives a better image of the baby and was told everything was normal and that we were expecting a girl. I was so happy, I had my little boy and now I was going to have my little girl.
On Oct 11, 2000 after only 7 hours of labor at 6:12 am, our daughter Taryn was born. She was 7lbs 12oz 19 1/2 inches. Her Apgar score was a 9. We thought everything was perfect. She went for her first check-up at 2 weeks old, we were told everything was normal.
When she was 3 months old we noticed that she wasn't moving her legs very much I took her to the doctor and he said she was fine and that I was comparing her to my son too much, she just might do things later than him. I just didn't feel comfortable with that answer. Two weeks later my son got sick and I took him to the doctor, we saw his partner, I asked her about Taryn's legs and asked her to take a look. She examined Taryn and said that she was very floppy and seemed to have little muscle tone, she called a neurologist and set up an appointment. The following Monday we saw the neurologist she also said Taryn was floppy and called over to the hospital PICU and had her admitted for tests.
On January 10, 2001 we were admitted to the PICU for a blood test, urine test, and a chest x-ray. An hour after the x-ray the doctor came in and said your daughter has a bell shaped rib cage and the only disease that causes that is Spinal Muscular Atrophy, but we need a blood test to confirm it, the results will be back in 2 weeks. He told us he was going to get us some information on it and he'd be right back. After he left the room I said to my husband o.k. now we at least know what it is, let's find out how to treat it.
When he returned he handed us a paper that said Spinal Muscular Atrophy is a neuromuscular disease that effects all voluntary muscles such as crawling, walking, swallowing, breathing, head & neck control. His advice was don't let her get sick because a simple cold will probably do her in by the time she's nine months old.
That night as I watched her sleeping, all I could think about was all the things I might not get to see her do. I might not see her get her first tooth, first birthday, first day of school, her driver's license, her prom, her graduation, her wedding day, or her first baby. I couldn't breathe thinking about it.
The next day we left the hospital, the ride home was silent, all I could think about was how was I going to tell my son that his baby sister might die. For the next 2 weeks I begged and prayed to God that the test would come back negative. I tried making deals with him I begged him to take me instead. I got the phone call 16 days later, it was positive, I wanted to die. I called the MDA clinic hoping they could help, they examined her and told me to sign DNR papers. I left there with no hope, I went home trying to accept that my daughter was going to die. For 2 weeks I did nothing but hold her and cry. My son said to me mom don't cry just keep fighting, we'll find a doctor, I ask God every night please don't let my sister die I love her. My 4 year old son was stronger then me, he made realize I couldn't just sit back and watch my baby die, I had to fight.
I called every MDA clinic until I found someone who could help me, or was at least willing to try. I spoke to Dr. Jennifer Micheals, she told me to fax all Taryn's medical records to her. She called me the next day and said to me that if I was willing to work very hard 24/7 for the next couple of years that I could see my daughter learn to read and go to school. She actually saved my life that day, I will always be grateful to her. We went to see her on Feb 14, the best Valentine's Day I ever had. That is where Dr. Micheals introduced me to Dr. Bach, she said that he can be overbearing at times, but that he has a heart of gold when it comes to SMA babies. I can't thank him enough, he introduced me to everyone at University Hospital that would eventually end up showing me how to take care of my daughter. The entire staff in the PICU, and respiratory department are like my family, I could never thank them enough.
Taryn had her first bout with pneumonia on Feb 27, since then over the last 4 months she has been in and out of the hospital. So far she has spent 76 days in ICU, had 3 surgeries, 72 chest x-rays, pneumonia 4 times, RSV, and has gone into cardiac arrest 4 times, right now she is stable but that can change in a minute. She is being considered for a pacemaker.
No matter what my little girl is going through she always has a smile for everyone. People ask my husband and I how we get through it, we tell them one day at a time and a lot of prayers. Life for us right now is hard, we constantly have to fight doctors, insurance companies, nursing agencies, and ignorant people. We have no privacy, the nurses tell us what's best not only for Taryn but for our son as well. They don't have a clue about what my daughter or my son need.
My son has had to accept quite a lot over the last 5 months. He really didn't accept having a sibling yet, then on top of that having one who is so ill, and needs constant attention all the time. This has been very hard for him. When he's out playing with his friends, if he hears an ambulance he'll run home to check on his sister. He has nightmares about Taryn dying, and his mommy being gone for so long while she stays with Taryn in the hospital. He deals with a lot, we have nursing 16 hours a day, 5 therapists, and a teacher come every week. I try to give him as much attention as I can.
My relationship with my husband and family is strained most of the time, we feel extremely guilty for Taryn having SMA. I know we didn't intentionally give it to her but we see her suffering, and can't help but feel guilty. We also wonder as she gets older will she hate us for this. When she has gone into cardiac arrest I have asked myself would she want me to keep fighting so hard, but when I look at her big brown eyes I can't let her go. She already knows that she's different, she'll watch her brother run around on the floor playing with daddy, and she'll cry until they go over and lay down next to her.
Life right now seems unbearable, we can't go out in public with Taryn, for fear she'll get sick, but I'm grateful to God for each day I get to see my daughter's beautiful smile. I pray everyday for a cure for all our SMA babies who are suffering. My little girl is my hero, I don't think I could ever have gone through what she has, and still manage to keep a smile on her face, she's what keeps me going. She has changed my life in so many ways, I appreciate things a lot more now, and don't take anything for granted, she has made me a stronger person, I can't thank her enough for what she has given me.