Morgan's Story

From Birth To Diagnosis:

In June of 2002, I found out that I was going to have a baby GIRL! I was so excited. Morgan is my third child, and my first daughter. She was born on October 29, 2002, and everything about her was perfect. She was an aggressive eater, and she even rolled over at five days old. She was quite demanding and loved to be held, all the time. She has always been very happy and content. She could hold her head up quite well at three months old, and she loved (and still does) to talk from about six weeks old.

When she was about six months old, I noticed that she was not trying to roll around, but my "What To Expect The First Year" book said that not all babies take to rolling. When I took her in for a well baby check on June 9, I mentioned to her pediatrician that she was not yet sitting on her own. He asked if I was concerned about it, and I said that I was a little bit. He referred us to a neurologist. At first they said I would have to wait until September for an appointment, however, he did not want me to have to wait that long (I suppose that is because he knew how worried I would be until then). He managed to get an appointment on June 11, for my daughter. When we walked into the doctors office I was fairly confident that he would tell us that she was fine, and that I was just overly concerned. I know that my pediatrician is very thorough, and just wanted to eliminate any neurological problems.

We saw the doctor, and he explained that she could have something life threatening. I thought, “NO! This can‘t be real.“ He wanted to tell us about anterior horn cells, and how a recessive gene would be the cause, but I was not even listening. After he said that she could die, I just could not believe anything he said. Thoughts rushed through my head - I had in my arms, a beautiful, healthy, happy baby. - there could never be anything that wrong with her - she was my third child! - I would know if something was seriously wrong with her. I was shaking so much that I could not even hold Morgan. The doctor ordered and EKG, a chest x-ray, and blood work. We do not have any genetic disorders in our backgrounds, so we were sure that she was just “developmentally delayed” - a phrase that I was quick to latch onto after looking at the alternative, SMA. The next ten days were awful. We waited, and researched the disorders that the doctor had tested for, and waited. When we found the F.S.M.A. website, we decided that even if Morgan did not have S.M.A. we would donate to the organization. We cried as we read the stories of other children, but there was also hope in the stories. I am so grateful for the “our-sma-angels” websites, because I have had an opportunity to get to know the children, and how they were living with S.M.A. The night before we received the results, I finally came to a decision, that if Morgan had S.M.A., it was type 2, and that there was a lot we could do for her. As it turns out, she was diagnosed on June 20, 2003 with S.M.A. type 2.

Diagnosis until December 3, 2005

We spent everyday with Morgan, having the best time of our lives everyday, which prompted her to start saying each morning, "It's a beautiful day!" We did not have time to write about the daily events, as we were too busy enjoying them. We have tons of memories, and we will post them in Morgan's Journal now.

December 3, 2005

This is hard ~ so very, very hard. Yesterday was Morgan's Memorial Service. It was beautiful, and terrible. Bill and I had never discussed what we would do if Morgan were to pass away ~ it never crossed our minds. NEVER. We had plans for her ~ about a year ago, I told Bill that we needed to start working on designing a wedding dress for her to wear in her wheelchair. I remember thinking that when she had her children, I would stay with her, and change her babies diapers, burp them and give Morgan her babies to hold. I would go to her house, and hammer the nails where she wanted to hang pictures, do her laundry, wash her dishes, whatever I could do for her. I had plans. I just knew that everything would be okay.

On Saturday, we did Morgan and Clayton's home pre-schooling for about three hours ~ they painted, made hand-print reindeer, and we went over the Advent calendar. It was a wonderful day. She was happy, and funny ~ just like everyday. She loved to tease me about pretended to lick the glue on her projects ~ she would stick her finger in the glue, and bring her hand to her mouth, and pause, for effect, and to give me time to reprimand her ~ then she would get a twinkle in her eyes that was brighter than the brightest star, and slowly bring it closer to her mouth. I don't think I ever realized just how adorable it was ~ I would just wipe off her hand. After school, she went into her stander, played with her Polly Pockets House of Style, and was kind of watching Jimmy Neutron. Bill was folding the laundry, and in and out of the laundry room.

I was in and out trying to get things together for their next school project, and I had just heard her talking to her "girls," the Polly Pockets less than a minute before and Bill started screaming "Morgan! Morgan!" I ran as fast as I could, and he already had her horizontal, and was doing CPR, while he continued the CPR, I unhooked all of the stander straps and her Benik (a soft trunk support), and we moved her to the floor. I ran upstairs for the oxygen, and he just kept doing the chest compressions, while I tried to give her oxygen with the ambu-bag. Still nothing. I called 911 ~ and it took forever ~ it seemed, for them to get there. The rescue men and women were wonderful, and they worked so hard on her. The last time that Morgan crashed, I wouldn't let the rescue people do anything, this time, I knew that I wasn't the right person to help her. I backed away, and just prayed, and begged ~ I begged God, and I begged the EMT's to help her. And they did, they just kept pumping her heart for her, they intubed her so that she could breathe and get oxygen to her brain. They took her to Bayside Hospital, and let me ride in the ambulance. They kept trying to get her heart to start up again, and finally after 38 minutes from our call to 911, and two shots of Epinephrine (which I think is like Adrenalin) her heart started beating again on its own. During this time, I called Suzanne, and she put out an URGENT prayer request across the country for people to start praying for Morgan. She also was able to get in touch with Brian Weaver, whom we needed to talk to.

Rev. Will was immediately there, and he prayed for Morgan, and said he would see us at CHKD. The team from CHKD came in and Morgan was starting to breathe against the ventilator. I thought that those were all good signs. They gave her some Versed to keep her sedated, and some paralytic drugs to keep her from moving while we were in transport to CHKD. Her x-ray looked like she had aspirated some vomit in her right lung, but I knew that we could get over a pneumonia if she had one. They again let me ride with her in the ambulance to CHKD, but we had to stop on the entrance ramp from Independence to the Interstate. I was in the front, and had no idea what was going on in the back, but when we got back on the interstate, we seemed to just fly to CHKD. They took Morgan right to the Pediatric Intensive Care Unit (PICU), and the chaplain on duty meet us outside the unit. She said it would take some time for them to get Morgan settled, and that I needed to register her before they would be able to order medications for her. She walked to admitting with me. When we came back to the waiting room, Bill was there, and Rev. Will. We talked about Morgan and the great morning we had had. The first time that we went there I was a wreck while they were "getting her settled," but this time I was okay with it. I knew that the Intensivist was awesome, and I knew a lot of the nurses, and Respiratory Therapist's. CHKD has the BEST PICU ~ like each person in there was hand selected. The chaplain told me that a lot of the people up there remembered Morgan from our stay in March, and they just adored her then, so I knew that they were doing their best, and then some for her.

Finally, Dr. J. came out to talk to us. She told us that there had been 38 minutes between the time that I made the call until her heart restarted on her own, she said that Morgan had sustained some major brain damage, and that we could expect her brain to begin to swell that evening. She said that Morgan was not trying to breathe on her own against the vent, and that she would have an EEG in the morning to see if she had any brain activity. We asked about the hyperbaric treatments where some brain injured children have actually reversed some of the injury, like Lauren, Aunt Debbie's niece. We had talked to Rob (Lauren's dad), and he offered a lot of advice as far as what to expect and what treatments had been successful with Lauren. In fact, Dr. J. Was the same doctor that had treated Lauren several years ago. I called Brian W., RT and he told me that SMA kids were amazing, and he gave me hope ~ I really needed HOPE. Thank you so much, Brian.

Morgan was doing pretty well, she started breathing against the vent, and we were able to reduce the amount of O2 to 40%. Around 11:00pm, I was going to take a nap, but I just could not get to sleep. So, I came back into the PICU. After about 5 minutes, I started to notice that her blood pressure was starting to drop. I called Gail, RT over. She and the nurse started to listen to her pulse it was getting very weak. They brought the crash cart over, and monitors that would amplify the pulse sound. Still very weak. Finally, Morgan's blood pressure started to drop. They called in the senior resident, she had remembered Morgan from March when she was in the PICU. They decided to call Dr. J. They knew that she would be there quickly, and she was. They had already given Morgan two more shots of the Epinephrine, and Dr. J. said that they could continue to do that, but it would probably only prolong the inevitable. It was not a decision that we wanted to make ~ we love Morgan so much ~ we would be able to take of her if she was brain damaged, she was still our baby, and we wanted more than anything to keep her here with us. They started a dopemien drip to keep her heart going. But even with a ventilator, and the drip, her blood pressure dropped. Her Daddy held her in his arms, and I held her legs, rubbed her tummy, as her blood pressure continued to drop. The nurses began turning off the machines, and that was when we knew she was no longer with us.

I believe that she was able (although with the amount of damage to the brain, it is really unlikely) to make the choice that we could not make. I think that she could have lived very happily with SMA attacking her body, but once her brain was damaged, she just did not want to stay here. I hope she made that choice. I hope that she was not scared. I hope that she knows how much we love her, and how much we will miss her until we meet again.