MEET TEAGYN CHACE SMITH

10-13-00  1-8-05

Proud Mummy Nicola Smith

Teagynsmum@aol.com

www.angelteagyn.bravehost.com

When I first found out I was pregnant I was scared, I had a dead end job and things were not working out with Teagyns dad, but at the same time I was happy, happy that I was going to be a mum. My pregnancy was great I never got sick, not one time.  AT 2am on October the 13th 2000 I started having contractions, I wasn't sure if they were real as Teagyn wasn't due for another two weeks. The contractions continued and I called my mum who told me she would be there soon. I went to the Hospital at 530pm and Teagyn entered the world at 743pm on 10-13-00. She was really cold and didn't cry at first but once they warmed her up and stimulated her she was fine. She had trouble eating and I was told it was because she was vacuum extracted, we were sent home 3 days later and I thought I had a happy healthy baby girl.

The next day my mum noticed what she thought was a seizure and that is were our journey in to the world of special needs began. Teagyn was taken to the ER, she was transferred to the local children's hospital and was placed in the ICU. No one could figure out why Teagyn was having seizures, she was heavily sedated and placed on a ventilator for 5 days. It was at this time that we also discovered that she had Hypotonia, low muscle tone. Once off the vent it was noted that she desated while eating, it was discovered that she aspirated and that she had severe reflux. Teagyn was fed via an ND tube for the first 6 months of her life. After spending 3 weeks in the hospital we were home. I had to learn to give her loads of medications, I had to take CPR and I had to learn how to feed her through her tube.  All that didn't bother me; we were home.

This is also where the testing phase began.  Teagyn was tested for hundreds of diseases, everything was normal.  She had MRI, CT Scan, EMG, NCV everything was fine. Teagyn started therapy at 2 months old, she received PT, OT and ST every week. At six months of age Teagyn was taken of her seizure medications and her feeding tube YEAH!!! She was finally able to eat by mouth and with not taking medications she was more awake and more alert. Teagyn had the biggest smile and the greatest laugh. She would get so excited that she would arch her back and throw herself back. She always got excited when she saw me, she laughed at the silliest things, like a cash register beeping or the shaking of a head of hair, she was so happy so content.  Teagyn was finally starting to make progress, she was gaining skills. She learned how to hold up her head, she could sit for a few seconds, hold her own cup, actively play with toys, and feed herself using her fingers. She could stand and take steps with a lot of support. Life for us was good. I had no idea just how drastically life was about to change.

In October of 2002 Teagyn was scheduled to have her tonsils and adenoids removed, the surgery was scheduled for October 15th two days after her 2nd birthday.  I was told the surgery was a success, but after her surgery Teagyn was never the same, she couldn't hold her cup, or finger feed herself.  In December of 2002 another MRI was performed, it was at this time it was noted that Teagyn was having myelin problems. It was thought that Teagyn had a lukeodystrophy so more testing began. All the test were still coming up negative, I was starting to get mad, I wanted to know why she was loosing her skills, why couldn't someone tell me what was wrong with my girl.

In June of 2003 I decided to take Teagyn to CNMC in Washington, DC, to see if they could tell me what was going on. We stayed there for a week Teagyn had another MRI and more blood work, it was at this time that her very long chain fatty acids came back slightly elevated, not high enough to be considered significant. Teagyns MRI was also worse, she was loosing more myelin. I remember asking the neurologist if she was going to die, he said he couldn't tell me.

In November of 2003 we went back to DC again, this time they did a skin biopsy, blood work, and a spinal tap. I thought nothing of it, I was sure we wouldn't find out what was wrong with Teagyn. I really wanted an answer but only if it was a good one. 

We came back home and continued on with life, Teagyn loved going to daycare she loved being around her friends, we continued to go on as we always had. In December of 2003 I got a call at work, it was the nurse assistant from CNMC she asked me if I could come to DC tomorrow, I knew it wasn't going to be good news, if it was good they would tell me over the phone right?? I broke down at work, I had to leave I couldn't stop crying I was so scared, I didn't know what they were going to tell me. I remember walking in to the little room, I remember the neurologist say Peroxisomal disorder, I just started crying, I had read about peroxisomal disorders they were not good. This couldn't be true, I couldn't believe what I was hearing, there was no way this could be happening, not to my Teagyn.  I left the hospital that day in total shock but I vowed that I would do everything and anything to help her.

During 2004 Teagyn continued to slowly loose more skills, she couldn't sit up, she could no longer eat table food, she was becoming floppy again. I was devastated but I didn't let it consume me, I had to go on, I had to make sure Teagyn lived a good life. Teagyn was enrolled in special needs preschool which she loved, it was also discovered that Teagyn had hearing loss so she was fitted with hearing aids.  We went and saw a Peroxisomal specialist who told me that Teagyn had a single enzyme defect he thought she had D Bi-Functional Protein deficiency. He told us there was no treatment no cure, and that Teagyn would die. Those words just rang in my ears, no one should have to hear that there child is going to die. I remember sitting there and telling him I didn't believe him. Teagyn in my eyes was fine, she was perfect.  He told me about DHA we started Teagyn on it immediately I didn't tell anyone I was giving her it and everyone noticed a difference, it was great, she was more alert, she was babbling more.

We continued on. Teagyn continued with school and daycare, we went to Scotland Teagyns 5th trip where she was a beautiful flower girl in Uncle Marks wedding. Life was moving along and Teagyn was stable. Then the day we came back form her trip Teagyn had a fever and was having trouble breathing, she was admitted to the ICU. It was discovered that Teagyn was having seizures those horrible things had returned with a vengeance. She also had a UTI and I had to start cathing Teagyn as she was not urinating on her on. Teagyns seizures were different this time, she was rolling her eyes back and turning blue, we tried so many medications but nothing was working. Teagyn continued to attend school and daycare we kept living life the best that we could.

In September 2004 I found Dr. Martinez while looking for information on peroxisomal diseases online; I was so happy to have found her.  Dr. Martinez was using DHA EE on peroxisomal patients and she was having great success. She had only tried it on generalized disorders and was unsure if it would help Teagyn because she had a single enzyme defect. In November of 2003 Teagyn spiked a fever, she went in to status epileptics she had 200 seizures that day. She spent 2 weeks in ICU, her lung collapsed she was ventilated, I was so scared, I remember saying to my mum what if she dies, I said it but I never really thought it. But my little fighter fought and won and we came home on my birthday November 29th. This time though we came home with oxygen and a pulse oximiter. Teagyn was desating while seizing and needed the oxygen to bring her up.  I was so distraught and devested, I immediately emailed Dr. Martinez begging her to see Teagyn I was desperate, she agreed and we were scheduled to go to Barcelona Spain on 1-11-05.

Teagyn recovered we had a great Christmas, things were good. Then on 1-3-05 Teagyn spiked a fever, I took her to the pead who said she had pneumonia and an ear infection, she was not hospitalized as she was not that bad. She wasn't getting better so on 1-5-05 she was admitted to the hospital. We were on a regular floor, she was so sleepy so out of it. She was given IV antibiotics, but her fever was still so high, I was there with her the whole time, I always stayed with her. She was finally placed on the cooling blanket and her fever was down, her stats were good, she was on 1/2 liter of 02 she was getting better. We were told we could go home on 1-8-05 I was relieved and excited as we had our trip to go on. Teagyn had being having desats off and on all night, we just assumed it was her seizures as she always desated but this time she was going lower, she had no color change though and bounced right back up.  At 1045 the RT came in to give Teagyn her chest PT, I picked her up to position her and noticed that she had popped, the RT said she would come back. I remember changing her and picking her up, kissing her and telling her that I loved her, I tucked her back in bed and I sat down to watch the TV. The RT came back at 1145 and asked me to go and get the nurse as Teagyn machine was saying that she was in the 50's but she was not blue, she was sleeping peacefully. The nurse came about 15minutes later, at 1201 am Teagyns heart stopped. It just stopped. I was screaming, I ran to call my family a code was called, but my baby was gone. her heart had just stopped.

I still cant believe that it is real I miss her so much, I remember running in her room, screaming NO NO and falling to the floor I couldn't believe it was real.  My family came and we all held Teagyn I sang to her, I rocked her and kissed her then I tucked her up in bed, it was so hard to leave that room and leave her alone. I don't remember much of her funeral. It was all a blur, I remember walking in and seeing her in her casket, she looked as beautiful as ever, she was so gorgeous, I picked her up and I held her, I held her every minute that I could. After her funeral I held her again, I put her to bed for the last time, I covered her up and kissed her and I left the church. I will never forget that day for as long as I live. None should have to bury their child, no one should have to watch their child regress.

Teagyn was such a little fighter, she fought right until the end. My poor baby went through more in her 4 yrs than most people would in 10 lifetimes. She had to endure horrible seizures twice, she was poked and prodded thousands of times, she was ventilated twice, fought of many infections and through it all she was happy. In the end her little heart got tired, Teagyn got tired and she flew peacefully to Heaven.

Despite all of Teagyn's needs she had a great life. She was treated just like any other 4 yr old. I refused to let anyone else treat her differently. She attended special needs preschool and daycare. She loved painting, swimming, bowling, dancing everything a "normal" 4 yr old enjoys. Her favorite food was chocolate and slurpees. She loved life and we loved her, and she will never be forgotten. She taught us all the ultimate and that was that love is unconditional and unselfish. I miss her more and more everyday, but I hope to keep Teagyns memory alive by helping others, I want to make her as proud of me as I am of her. I love you baby girl and I always will.  I believe that you are now a happy healthy little girl in heaven. I will love you always and forever. Rest in peace sweet pea.

IT MATTERS NOT HOW LONG A STAR SHINES WHAT IS REMEMBERED IS THE BRIGHTNESS OF ITS LIGHT.

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Last updated: June 1, 2007