Featured Stories

HOPE

There was never a night or a problem that could defeat sunrise or hope.

-Bernard Williams

Hope is being able to see that there is light despite all of the darkness.

- Desmond Tutu

Once you choose hope anything is possible.

-Christopher Reeve

TRE & EMERSON

Parents: Tyson and Terra Spiehs-Garst

I was a young teenage girl that was not making the wisest decisions. Consequently, I became pregnant. I was 5 months along before anyone found out. My parents immediately took me to an OBGYN. I have a balanced translocation, so an ultrasound and amnio were done the day before Thanksgiving. It was that day we learned we were having a little boy. My boyfriend (now husband) and I decided to name him Tre Avin. The doctor informed my mother (I was kept out of basically everything because I was underage) that the baby did have some concerning markers, but none of this information was relayed to me until we received the final results of the amnio a week later. I remember that day like it was yesterday. My dad picked me up from school because my mom was working. He offered to make me dinner (this never happened), and I thought that it was odd , but I figured it was just because I was pregnant and tired...little did I know what was awaiting me at the end of the meal. My dad tried to gently break the news to me, but I of course did not take it well. I tried to hold it together, but inside I was falling apart. we had family meetings, they did further ultrasounds to determine whether or not I could be induced at 5 months...none of the time including me in any of the decisions because I was "underage". On February 21, 1997, I was induced. Tre was born on his due date after 10 hours of labor. He weighed 6 pounds 9 ounces and was 20 inches long. When he was born, he didn't cry, and he was blue. There were 4 nurses and 2 doctors in the room specifically for him. They turned to me and said that he was only taking shallow breaths. That was enough for me...he was breathing! I tried to nicely yell to bring him to me, and as they laid him in my arms, he began to cry and pink up. The doctors turned in utter shock that he made any noise at all, let alone cry. We did an x-ray and discovered that he had a severe diaphragmatic hernia resulting in the absence of not only his right, but also at least half of his left lung. We knew that even with surgery (at that time the survival rate was only 50% for children with more lung tissue), there was no hope for survival. We opted not to feed him because the enlargement of his stomach (which was located in his right chest cavity) put too much pressure on his remaining lung tissue and heart. Tre lived 9 amazing sweet hours with us. He was held for almost his entire life (except for when he was first born and during the x-ray).

 

Tyson and I waited to get married until after college, and we discussed whether or not we even wanted anymore children based on the genetic risk. God made up our minds for us, and we became pregnant with a little boy who also has a translocation, 3 years later another little boy with typical chromosomes, and then 3 years later another little boy! Emerson was diagnosed with partial T18 when we were 17 weeks along. The depression that I slipped into was intense, but my other boys kept me going even when I didn't want to.

 

Emerson was born via induction at 40 weeks and 2 days and weighed 5 pounds and 15 ounces. He was 18.75 inches long. He made it through the first night, and my gut just knew that he was going to have a very different story from his brother's. He began having apnea when he was 20 hours old. He had 7 episodes the first day. He also had a lot of feeding issues. We inserted an NG, started some oxygen, fed him some breast milk, and he was like a different baby within 30 minutes. He did have more obstructive apneic episodes, but nothing like those first ones. We discovered that he was gray when he was not skin to skin, so he lived the first 2 months of his life in my shirt. The first few weeks were really touch and go...I was a wreck emotionally with all of my hormones and the stress. We did have people spending the night watching him because otherwise, I wouldn't sleep (despite having an apnea monitor). I did finally relax some. The first 7 months were rough...a simple cold caused so much airway obstruction that we would stay up at night holding his airway open. Finally, we found a doctor that had a solution...jaw surgery. When Emerson was 7 months old, he underwent a mandibular distraction. At that time, they also discovered that his diaphragmatic hernia (we knew about, but it was mild and he had full lung tissue) was bigger than expected, so they repaired that as well, placed a g-button, and put ear tubes in. He came out of surgery breathing quietly - something we had never heard his entire life - and off oxygen. He continued to grow, and 3 months later, he had the metal hardware removed from his jaw, and his very enlarged adenoids removed (they attempted with the first surgery, but his jaw was so far back that they couldn't be reached). Emerson kept learning to do more things, and at 15 months old when he underwent his routine abdominal ultrasound, we discovered that he had multiple tumors on both his kidneys.

 

We met with an oncologist who informed us his partners were refusing to treat a child with Trisomy 18, but he felt we needed to try and recommended going to an ethics committee. The day before the committee meeting, I was on the phone with our pediatrician prepping when my mother called to notify us that my grandmother died. We went into the meeting the next day fearful we would loose not only my grandmother, but also our son. One look at Emerson, and the committee agreed with all of our physicians, that Emerson deserved a chance and should be allowed to have chemo. Emerson tolerated chemo very well (except he hated central lines and his body fought every one of them), was not hospitalized due to chemo, and has remained tumor free since 6 weeks after chemo ended.

 

The next few years of his life were filled with improvements in walking, learning his numbers, colors, grasping, getting on his hands and knees, rolling, etc. He joined a dance group for special needs kids and did a 100m race in his walker. Emerson also became a big brother during those years...a role that he both loves and hates. He loves to pester his little brother, and he also loves to play with him. He loves being on the move. At 5 1/2 years old, Emerson started acting in pain and crying a lot. We went to many appointments, ER visits, testing, and no one could figure out why. Our instincts told us his diaphragmatic hernia was the issue, but this idea was met with resistance. It took 3 months to convince physicians to sedate for a CT scan to check our suspensions. In that time, Emerson cried for hours everyday, began having airway problems, refused to walk/dance/play, and began having seizures. The CT scan confirmed our suspicions. His colon and liver were once again in his chest cavity and also being constricted with scar tissue. A Chait tube was inserted to try and help the damage that had been done to his colon, but the tube site wouldn't heal and was causing a lot of infection and pain issues. After 4 months, the tube was removed. Unfortunately, the seizures stayed through it all and continued to get worse.

 

Emerson has traveled throughout the country meeting with neurologists and working on getting his seizures under control. When he has the energy, he still loves to dance, walk, roll, play with brothers, and even swim. But some days he just needs to spend the day snuggled up with Mom, dad, or one of his brothers.

Aiden Jax

Aiden Jax Gonzalez was born 7/27/18 at 10:19 am and sadly went to heaven the same day at 3:25 pm. He lived a beautiful 5 hrs/6 mins. At my 14 wk ultrasound scan Aiden was found to have Trisomy 13. The specialist asked me to terminate my pregnancy which I refused immediately, with prayers/faith/hope I continued my pregnancy hoping for a miracle & that Aiden would be healthy. Hearing the Dr tell us that he was "not compatible with life" was the worst, but we kept our faith/hope strong. The chances of Aiden's heart stopping inside my womb were high, yet I carried him for 40 wks/2 days. Aiden was a brave/strong lil boy, he fought to meet his family, he fought until his last breath. I am so proud to be Aiden's Mommy.

Aiden Jax Gonzalez was born 7/27/18 at 10:19 am and sadly went to heaven the same day at 3:25 pm. He lived a beautiful 5 hrs/6 mins. At my 14 wk ultrasound scan Aiden was found to have Trisomy 13. The specialist asked me to terminate my pregnancy which I refused immediately, with prayers/faith/hope I continued my pregnancy hoping for a miracle & that Aiden would be healthy. Hearing the Dr tell us that he was "not compatible with life" was the worst, but we kept our faith/hope strong. The chances of Aiden's heart stopping inside my womb were high, yet I carried him for 40 wks/2 days. Aiden was a brave/strong lil boy, he fought to meet his family, he fought until his last breath. I am so proud to be Aiden's Mommy.

Will James Cowen

We lost our sweet baby boy Will James Cowen to trisomy 13 after having 26 minutes with him. Those precious minutes were spent holding him, kissing him, and telling him how much we love him. We believe that God chose us to be his parents and to be able to provide the most unconditional kind of love during his time on earth. He brought my husband and I closer to God and we are so grateful to have had our special moments with him.

© 2018 Hope for Trisomy 13 and 18, Inc.
 

  • w-facebook
  • Twitter Clean

CONNECT​ WITH US:​​

  • w-youtube

PO Box 121986

Arlington, TX 76012

eMAIL

ADDRESS

866-977-6637

PHONE NUMBER