Written by Laurie Yarie
Our story starts in September of 1997.
My husband Mike and I were both previously married. I had 3 children: Joshua age 8, Amber age 7, and Brandon age 5. Mike had a daughter Nicole age 7.
On September 13th of 1997, my ex-husband had a visitation with our 3 kids. On his way home back to Wausau his vehicle was struck by another vehicle that had run a stop sign.
Our daughter Amber died in the ambulance on the way to the hospital. Our son Joshua, whose life was hanging on by a thread, was transferred from Wausau to Marshfield for emergency surgery for very severe internal injuries and severe head trauma. Brandon, who also sustained severe injuries was transferred to Marshfield as well.
Joshua was placed on life support but did not make it. He was able to bless others and his organs were donated. Several days later, Brandon was able to come home from the hospital but was not able to return to school until January.
At this point in time, you may be wondering why the tragedies above are so important to this story.
Well, having gone from 3 children of my own down to one child became extremely lonely. Mike and I had talked about having a child together, but in those conversations, we had 4 kids total and decided that was enough – until the accident.
After the loss of Amber and Joshua, Mike and I decided to have a child together. I was 36 and had pre-term labor with all my previous pregnancies so we saw a high-risk pregnancy doctor. We ended up getting pregnant and prepared to welcome a new baby into our family.
When you’re categorized as a high-risk pregnancy, you have a lot of extra appointments and tests. The first ultrasound showed our baby was growing good but at the second ultrasound, they told us something did not look right.
A more extensive ultrasound showed our baby had Spina Bifida. We had so many questions…
How severe? What does this mean?
Will he walk? Will he talk?
What will his quality of life be?
How long will he live?
And so much more…
After several meetings with doctors, we did have an OBGYN who recommended termination. She told us a child who was severely disabled would create severe hardship on our marriage – physically, emotionally, and financially. Knowing we had already been through so much, she said that after losing 2 children the toll of a severely disabled child with no quality of life would be too much.
We ended up dumping that doctor.
We found a doctor we trusted in Milwaukee who had done more tests and more ultrasounds. We found out our baby not only had Spina Bifida, but also had a heart defect, club feet, and hydrocephalus.
Didn’t matter to us, it was our baby.
My sister-in-law read an article in a Woman’s World magazine regarding in-utero surgery. I bought the magazine, read the article, and ended up contacting the family in the article asked a lot of questions. We took all of that information and presented it to our doctor and ended up flying to Philadelphia to be considered for in-utero surgery. After all the tests, ultrasounds, and research, we were saddened to find out we were not a candidate.
Fast forward, and it’s January 20th, 1999. We welcomed our son Travis into the world and our family.
Travis was born 9 weeks early by c- section. Travis had Myelomeningocele L2 to L5, Arnold Chiari Malformation, and did have a heart defect known as Ventricular Septal Defect. However, he did not have club feet. Travis spent 67 days in the NICU. Came home for maybe a week or two then back to the hospital for heart surgery.
We were told that Travis would not live through his first year of life, that he wouldn’t talk, walk, he’d be incontinent, he’d have no quality of life.
Life has not been easy for our family or Travis. We have had a lot of sleepless nights, lots of questions about “why Travis? Why did this happen to him?” – we don’t know, and now it doesn’t really matter. Travis is 22 now. He’s here, he can talk, he loves to make people laugh, he loves music (to listen and play), sports, games, traveling, amusement parks, people watching, and so much more.
He’s had over 80 surgeries. Some were extremely serious, and others not so serious, but regardless all the surgeries were very serious to us.
He’s endured all his surgeries, all the hardships because he truly wants to be here and enjoy life. He loves his family and his friends. He has been an inspiration to many. And daily, I tell myself that we were blessed with Travis to help with the grief of losing Joshua and Amber.
He was our miracle baby, child, and now a young man. We love him, and we thank him every day for teaching us how to enjoy life, how to love, how to have patience, and the life truly is what you make it.” – Laurie
There are many other families in our community who are dealing with other conditions outside of Spina Bifida. Travis is one of them, he has:
Myelomeningocele L2 – L5
Arnold Chiari Malformation
Ventricular Septal Defect
Had a feeding tube, but no longer has it.
Sometimes having a longer list of conditions to manage and treat can be remarkably lonely and often feel isolated, even within the Spina Bifida community. If you’re a family whose managing many other conditions outside of just Spina Bifida, please know that you’re not alone.