My name is Kimberly Logan. My precious little boy came into the world, on his due date. 7lbs, 14oz. Nothing had prepared me for what was to come, 15 hours later, when Logan's pediatrician came in to congratulate me and to check on my little boy. Nothing in my ultra sounds or blood testing showed any abnormalities with my baby. During my pregnancy, Logan was very active, and all seemed to be going well. I had a little bit of spotting during my 5th month, but I just got off of my feet for a week and everything went back to normal.

When Logan was born after a 24 hour labor, I was so exhausted, I didn't really notice anything, other than he wasn't screaming, as my daughter had, 16 months prior. He just kinda let out these little noises. The nurses were rubbing his feet and trying to stimulate him. I thought he was exhausted too. My mom said, "Oh he's just a little lazy." The nurses said he was having a little trouble breathing, so they wanted to take him and let me rest. It was 10 pm after all. So, I did.

First thing when I awoke was to call the nurses station and ask for my baby. They brought him up, and we bonded and I nursed him. We had visitors, and all seemed fine. I thought he looked a little different because he was a natural birth, as opposed to my daughter who was born by c-section. He had extra digits, but I was assured that, that was very normal and not to worry. I noticed that his eyes were really scrunched shut, but again, I thought it was because of the natural delivery.

About 5 hours after Logan came into my room, the pediatrician showed up. He took one look at Logan, and got a very concerned look on his face. He said, "I'm going to take Logan to the observation room, so I can have a better look at him." Okay I thought. Maybe they did this with my daughter too, but I was too out of it to remember. Then he came back with this grim look on his face. I thought he was going to cry. See, he was also my daughters pediatrician, so he knew me very well. I was all alone. My husband had gone home to sleep, and my family and friends had left. There was a lull between visitors. Then came my worst nightmare. The doctor said, "I think your son has trisomy 13, I don't think he has eyes, his ears are low set, and we need to run some tests on him to be sure." You know those scenes in a movie where the person is standing there and the room pans out? Well, that is how I felt. I thought I was imagining what he was telling me. What was trisomy 13? What do you mean, you don't think he has eyes? What's wrong? How did this happen?

He took Logan, and I was left alone, and stunned. I had done everything right in my pregnancy. I've never smoked. Never taken drugs. I was only 26. What is going on here? I got on the phone and called my husband sobbing. He came down to the hospital immediately. We cried together. But we still didn't know what any of this meant.

I don't remember how much time passed before we found out the dna results. I remember leaving the hospital without a baby though. With my baby in the NICU. When the doctor received the results, he brought us into a room and gave us the bad news. "Your son has trisomy 13. He is most likely, not going to live more than a couple of day." "We are going to do a cat scan and see if he has eyes, but if he does, most likely, he will be blind." If he does make it a couple of days, he definitely won't make it to his first birthday." "He will be a vegetable and his quality of life will be very poor." "He won't be able to walk, crawl, talk." We sat there stunned and heartbroken. How did this happen I asked, Did I do something wrong? The doctor assured us that we had done nothing wrong, and that because I was so healthy, that is probably why he made it to birth, it was just a 1 in 10,000 chance that this could/would happen to anyone, and we basically won the lottery, in reverse.

I still had so many questions about trisomy 13. I went to my public library to look up information, but there wasn't any. I needed to know all about my son's condition. I found out, that I had to go to the Bio Medical Library at USC or UCLA. I went to both, as one of the books had been taken out. I copied everything and went home and read. Basically what I read was what the doctors read, and it didn't have a good outlook for my precious little boy. I read that he might have seizures, heart and kidney problems. The pages gave me no hope for him to live. About 4 days after he was born, we were at the hospital (I was determined to breastfeed and bond with my son), when the social worker came in. What came out of her mouth, still shocks me to this day. She said all the same things the doctor had already told us, and I had read. Then she added, "you don't have to take him home with you. The state has facilities that will take care of him. You are young. You have another baby at home. If you want to visit him you are welcome, but if you don't want to, that's fine too." What did she just say to us? Give my baby away? I looked at her dead in the face and said, "just because my son isn't perfect, doesn't mean we are going to give him away. I just worked 9 months to get him here. If he lives a week, he will live at home with his family. Not in some state run facility. And, he will be loved."

So, 1 week after Logan's birth, we were able to take him home. The only problem that he had at that time was that he couldn't suckle, so he had an ng tube in his nose, going down to his stomach. Getting up every 2 hours to feed him was exhausting, but we did it. First we had to check placement of the tube. Then it took 20 minutes to give him 20cc's. 1 hour and 30 minutes later we were at it again. But, isn't this what parenting is all about? Taking responsibility for your children. My poor husband got up with me for every feeding and then had to drag himself off to 10 hour days at work. Logan was a very fussy baby. More like he screamed constantly. He would shutter and then it would awaken him into a scream. I remembered what I had read about the possibility/likelihood of seizures, so I took him to the pediatrician and asked about it. Let me tell you, a mothers instincts are so sharp. He had an EEG at 18 months that showed nothing. I insisted on another EEG, but this time at Children's Hospital of Los Angeles. Finally at age 2 he was diagnosed with seizures and put on medication. They were so small, and so deep, that the machine had to gage the seizure by him actually having one.

From then on, his seizures seemed to be under control, and he became a happy boy. I then realized, that I was going to be spending a lot of time being an advocate for my son. I rarely took no for an answer. I insisted on tests.

Logan had a VSD, seizures, extra digits (which we had removed at 1), a herniated umbilical, undescended testicals, he had coloboma and detached retinas, all of the typical things that go along with trisomy 13, but he was my baby and I loved him so much. We had a very close bond, Logan and I. My family was so supportive and helpful, especially when my husband just couldn't handle life anymore, and left me when my children were 3 and 4. If it wasn't for my family's support, I don't know how I would have done it alone. My ex became an absentee father for many years.

Logan thrived. He grew, he always smiled. He loved life. And fortunately he was able to see a tiny bit out of one of his eyes, and boy did he use it. He loved the sun. We took him everywhere. Vacations, theme parks, the zoo, shopping and early intervention. He loved school and really caught on to so many things. I kept thinking to myself, when I would get his glowing report cards, "this is my vegetable?" He was very musically inclined and would spend hours playing with his little piano. He loved music and I made him many a mixed cd. He also had very strong opinions about what kinds of music or songs he liked and didn't. He adored his sister and loved to hear her and the other kids playing in his room around him. Most of the time you could hear him laughing quite heartily. One of his teachers submitted him to a gifted program, because of all that he overcame and all that he accomplished. He was the favorite of all his teachers because of his sweet nature. They used to fight over who was going to get him in their class. The teachers were wonderful with him and helped him to learn and enjoy so many things.

Logan's health was always a little sketchy. He was in and out of the hospital 5 times in his first year. He would have problems with pneumonia too. But each time, he fought like a champ to get better and come home. I can't tell you how many days and hours I spent at the hospital with him. I didn't ever want him to feel abandoned. But, I also had a little girl at home who needed her mommy. So I was really torn. I spent most of the day, while Ashtyn (my daughter) was in school, at the hospital with Logan. But I would leave about 5 or 6 pm, so I could spend quality time with my little girl. Thankfully, my parents would pick my daughter up from school and keep her with them till I got home. Many times too, my mother would go spend a couple of hours at the hospital with Logan, so I could rest. I almost lost Logan in the fall of 2005. He had a really bad case of pneumonia and was almost inti bated because his oxygenation level was in the 70's. He spent almost 6 weeks in the hospital. It was then that I requested a swallow study to be done on him, because I believed the pneumonia was being caused by aspiration. Sure enough, almost 1/2 of what he was taking in (which was a mostly liquid diet) was going into his lungs. He had a malformation of his esophagus. So, because I didn't want him to continue having pneumonia's I opted for him having a g-tube placed in his stomach. I figured, he had made it 10 years without one, but now was the time for drastic measures. It was hard, because I didn't have my ex for support to ask for his input.

The g-tube really helped Logan and he didn't have any more pneumonia's. Although, now, he started having grand mal seizures. He would stiffen up and stop breathing and I would have to resuscitate him and put him on O2. Unfortunately, these started occurring about every 10 days. His health really started to decline with the seizures, and he started to forget basic things. I believe that he suffered brain damage from them. But, he was still my sweet little boy.

This went on for a year and a half. Watching him deteriorate in front of my eyes was heartbreaking. I started to try to come to terms with the fact that he probably wasn't going to be able to live much longer. But, how do you prepare to lose a child? And, one that you have sacrificed your life and time to take care of and love. My kids have always been my life. The longer your child lives, the more you grow to love them, because you see their personality so much more than when they were first born. I tried to warn my ex husband (who at this point had been spending more time again with his kids) and my family, that Logan probably wasn't going to make it to 12.

On the day of January 05, 2007, after spending time with most of his family, his sister and he and I laughing about songs I was putting into new cd mixes, He went to sleep. When I came back into his room an hour and a half later, to feed him. He was gone. I tried to resuscitate him to no avail. I called 911 and was pretty hysterical. He had just had such a good day. There was no indication he was going to die. I wasn't ready. The only consolation that I had was that he died the way I prayed he would. At home with his sister and I, not at school, not at his dad's, my parent's, the hospital. He wasn't sick, and he didn't have a seizure. He died peacefully in his sleep.

I have no regrets. My son taught me so much about the human spirit and the will to go on when you are given no chance at all. He was happy and he was loved and adored. Now, I still mourn for the unconditional love that I've lost, and the light in my life. His smile. His essence. His laugh. His kisses.

I learned that having a child with trisomy 13 takes a lot of work, but the benefits of having such a beautiful person in your life cannot be compared. I hope that this posting might help some of you out there with a trisomy 13 baby, or pregnant with one. It's not a death sentence. To not have that child in your life would be robbing you of one of the greatest gifts ever.

God Bless.
Kimberly Logan
KymboLogan@yahoo.com