The follow story is all about my life as told by my mom.
When we first found out that I was pregnant with Rachael, we were very excited. This was Brian's first child and my second. I was almost positive that it was going to be a boy. In the history of my family girls were always first and the second child was always a boy. To my surprise when I had my sonogram, they said that it was a girl. I was shocked but then pleased. About my 5th month, the doctor told me that he wanted me to have another sonogram to measure the baby. I asked why and he said that the baby was measuring larger than my weeks pregnant. They did another sonogram and then told me that my doctor would contact me with the results. I went back to the doctor a week later and she told me that there was more amniotic fluid than there was supposed to be, but not to be alarmed. That she would just monitor me and get a sonogram every month for the rest of my pregnancy. I thought that this was unusual but shrugged it off. the rest of the pregnancy went ok until the last month. I was due June 18 and it was now the 20th. I was absolutely miserable. I looked like I was carrying triplets and was 210 lbs. Before I got pregnant I was only 127 lbs. On the June 20th doctors visit, the midwife told me that I would probably go over the weekend but we were going to schedule a stress test for the 24th. Needless to say I went into labor early the morning of the 24th. Labor was hard and very long, 12 1/2 hours, but she was finally born at 5:45 pm. The nurses were taking bets as to her weight. Well she was a whopping 10 lbs. 4 oz. and 23 1/4 inches long. She looked like a football player. Her Apgar scores were nine and nine but she was grunting and they took her to the nursery to do all their tests. I was beginning to hemorrage and everything got crazy. The nurse is calling for the Doctor "Stat" and there are people running in and out of the delivery room. They finally got everything fixed and took me to my room around 6:30.
It wasn't until 11:30 when I asked when they were going to bring Rachael in so that I could see her. I wanted her to room in with me and not to stay in the nursery. The nurse asked me who I was and told me to hold. I was on hold for what seemed like forever and then a Jamaican Doctor, who I could barely understand, told me that there was something wrong with Rachael and that he would be right up. An hour went by and I asked the nurse to come and take me to see Rachael. She told me that the Doctor was on his was from the NICU to talk to me. At that time I had NO idea what a NICU was. I asked her and she told me that is where they take the sick babies. I proceeded to asked her if she knew anything about Rachael and she told me that she didn't know anything. I got up out of bed, got my robe and slippers and walked 4 floors looking for the NICU and for Rachael. I had an epidural and my leg were still a little wobbly but I found it. I walked in the door and asked where baby girl Giro was. Told them that I was her mother and I wanted to see her. They said that the Doctor left instructions that he would be bringing me to see her. So they told me to wait. The Doctor came and tried to get me to go back to my room but I told him that I wanted to see my baby. He argued with me and I finally threatened him and he agreed to let me see her. I saw her and she was absolutely beautiful, LARGE, but beautiful. Then he proceeded to tell me that she needed a spinal tap to rule out menigitis, and that if she didn't have it she could die. This was the first time that I was to hear that my baby could die if she didn't have a procedure, but it would not be the last time. As far as I know, at that time there were no signs of SMA. If there were, then the Doctors never told me. Rachael had to stay in the NICU for 2-3 days because she was still grunting. They sent me home and I was an absolute mess. I had post partum depression terribly and to not have my baby only made it worse. I would get phone calls in the middle of the night as to when to come and nurse her. I would get up in the dark, throw on some clothes, drive to the hospital, nurse her, play with her a little until she fell asleep and then drive home. It was horrible!
Rachael finally came home on that Sunday. It was exhausting. ALL of both of our families wanted to come over to see Rachael. I wanted to keep her all to myself for a little while and do some serious bonding since I couldn't right after she was born.
Everything calmed down and we were all doing fine until August 12th. Rachael started sounding like she was having trouble breathing so I thought that she might be coming down with a cold so I took her to the Pediatrician. Her regular pediatrician wasn't there so she saw another one who had never seen her before. The did an evaluation and asked me if anyone had ever told me that Rachael didn't have very good head and trunk control. I told her no. She then told me that she wanted to do some tests and that she would let me know what she thought when she was done. So we stayed there for about an hour and she told me that she wanted to refer Rachael to their Evaluation specialists at Johns Hopkins Hospital. Well growing up in Baltimore, I knew that the Hopkins Hospital was for sick children and I immediately panicked and asked what was wrong with my daughter. She said that she wasn't sure that is why she wanted us to go to the Hospital and have some more extensive tests done. So we took her to Hopkins and we stayed for about 2 weeks . They did every test that you could imagine on this child and then about two days before we left this female doctor comes in to Rachael's room and asks me if I am her mother. I said yes and she introduced herself as a neurologist. She didn't ask me if I was alone or if someone was with me or not. Then without ANY feeling she told me that she had seen the test results and that Rachael had a Neuromuscular disease called Spinal muscular atrophy and that this disease was fatal before age 2. She acted as if this was no big deal and she had no compassion what-so-ever. I would realize later that this woman's face would haunt me for ever. Well on the day that we were to leave Dr. Thomas Crawford, Rachael's Neurologist now, told me that I had to get certified in CPR and that I needed to learn how to do Chest Physio Therapy CPT. So I learned how to do all of that and this just seemed like a sad movie that I had seen on television. It couldn't be real. This couldn't be my life and my 6 week old daughter that I had to learn all of these life saving techniques for. Could it?? When I got Rachael home I actually counted "32" holes in her arms and legs from where they had to stick her to take blood, give fluids, etc. They put "32" holes in my 6 week old baby! So I went home with Rachael on a smart monitor and I didn't sleep for 3 days because I was afraid that something would happen while I slept and that I wouldn't hear her and that she would die and I wouldn't be there when she needed me. So everything was going good until October when I found out that I was pregnant again! OH MY GOD! On top of everything else I was going to have another baby??? I was so scared to death that this baby would have something wrong with it too that I didn't want to have it. I mean I wasn't even really dealing with the situation I was in, let alone have to deal with another one! So the beginning of January 1994 I decided to do something that I was totally against. I terminated the pregnancy. I was devastated. But things went from bad to worse when January 27th Rachael stopped breathing. I called 911 and actually "argued" with the 911 operator telling her that she didn't know what she was talking about because she wasn't there and couldn't see how blue my daughter was. She dispatched the ambulance and Rachael was back to her base line by the time they got there. We went to the hospital anyway, just to be on the safe side. They kept her over night and didn't find anything wrong. 2 weeks later Rachael did it again and this time she stayed blue, ROYAL BLUE, until after the paramedics got there. We put Rachael on oxygen and took her in the ambulance to the nearest hospital, which at the time was Laurel Beltsville. Howard County General didn't have a pediatrics unit back then. They kept saying that she needed to be intubated, which back then I had Absolutely NO idea what that was and it scared me to death. I gave them Rachael's neurologists' phone number and told them to call him. He said absolutely DO NOT intubate her and that she was to be transferred to Johns Hopkins Hospital as soon as they got her stabilized. About an hour later I asked to hold Rachael and the nurse told me that I couldn't until she stabilized.
to be continued.......