About Tobyn's Triumph
Our Mission
Our Mission
Our Mission
Tobyn's Triumph is a nonprofit organization aimed at helping families of children with Spina Bifida by providing informative resources, care packages, and access to equipment. Through hope, encouragement, education, and the support of the Spina Bifida community, together, we can help to bridge the gap between what was once thought to be impossible with what is now possible.
Our Story
Our Mission
Our Mission
As Sean and I discussed having our 7th child one fall evening of 2019. We shortly realized after that our wish had come true for baby #7 that was due September 2020. This went on as all the other pregnancies but I seemed to be a little more sick. After having a miscarriage in September we were a little more worried this time around. A week before my 20th week ultrasound appointment my doctor had called and said that the levels were high for Spina Bifida. Wlell I honestly didn’t look anymore into it because she said then it could just be nothing not to worry. I didn’t even know what that was nor had ever heard of it. So that May I walked into my 20 week ultrasound alone since now we are in the height of Covid. Walking in I still was a little concerned that what does this mean if it’s true, well I went in and the women who always has done my ultrasounds stated that it did show that the baby had Spina Bifida. So she started to look and you could see my baby had what they call a lemon shape head, hydrocepholeus and an opening in the lower part of her back and spine. At this point anxiety was flowing high and I needed my husband with me! They said that Sean could come up and the tech called Sean for me to tell him that Our baby was missing part of her cerebellum. Sean arrived to see me distraught thinking of all the things and how we were going to make this work with sn already huge family of 6 kids. The doctor came in and confirmed everything but the crrabellum “it was all there” thank god! He said that she was showing movement in her legs and feet which was a good sign also. Next steps the doctor had us come to his office to discuss our options. #1 terminate yes of all things this was his first option! , #2 full term with a crippled child in a wheelchair forever #3 have this procedure done in Philly if you qualify. Well as you could imagine the fear of what was next took over me hard. For days I laid in my bed and cried and was stricken with depression on what does this look like for our family, why us, so many questions unsanswered and not knowing what the future holds for our baby girl.
With in a a day Childrens hospital of philadelphia had contacted me about this procedure they called fetal surgery on our baby at 23weeks to repair the Opening on her back. This was something we had never heard of and shortly realized how huge for our family this would be. We had to drive up and stay the night in Philly while I had 2 days worth of testing, mri, ultrasound, blood work, sitting down with a team of doctors nurses and many other specialist to discuss next steps and if i qualify . When we found out what our baby girl had which was called myelomeningocele (pronounced my-elo-men-IN-go-seal) is a defect and opening of the backbone (spine) and spinal cord. Before birth, the baby's spine, the spinal cord and the spinal canal do not form or close normally. A myelomeningocele is the most serious form of spina bifida but can very with the placement of the opening on the back. My husband had loved the name Tobyn because it was different and he had heard it from a girl on the us womens soccer team. I was up in the air about it until I looked up the meaning. In Celtic it means god is good! So that was the name !! So after a long 2 days of testing we got the final word that we did qualify for the procedure! So we had a week to find a place to stay for our family in philadelphia because once I have the procedure I have to be within 45 minutes of the hospital. So we reached out to the Ronald McDonald house but they did not take siblings and I was not leaving the children home with relatives I wanted them with me. So we found what they called host for hospitals where we could rent a home for a discounted price for any patients of chop. So we moved our family with 4 kids and a babysitter up to philadelphia. At 23 weeks I went in to have fetal surgery to repair Tobyns back and spine with a team of 15-20 in the operating room this was a huge procedure . The next 2 weeks I had check ups 2 times a week at the hospital to make sure the baby was fine and that I didn’t have separation of the lining of my uterus. On week 25 I was admitted into the hospital due to separation, and had to leave my children and husband while I was admitted into the hospital for the next 5 weeks. At week 30 I started to have a fever with bad cramping they couldn’t figure out what was going on until my water broke and found out I had an infection in my amniotic fluid called Corio which caused me to go into labor and deliver Tobyn 10 weeks early. Tobyn was born on n July 18, 10 weeks early weighing 3lbs 6oz. A long nicu stay continued after this with a lot of trials and tribulations 42 days later we were able to leave with our very preemie little girl and a apnea monitor.
At this point we were still unsure of what this surgery and our life would look like for Tobyn until she was older. About 11 months Tobyn started to use what’s called Bella’s Bumba that looks like a little wheel chair created by another dad in the Spina Bifida community. She started to slowly move around in this. Later on we noticed she had severe pain in her back on her scar to touch as well as to sit down. We found out after an MRI that she had tethered chord and cyst at the base of her spine which is common for babies who have had fetal surgery. On July 1/2022 Tobyn had a 7 day stay in the hospital after her tethered cord surgery, within a few days we noticed a huge difference in her movement and her interaction. Tobyn started to stand and fall with no pain, tumble, roll around, basically all the actions of a typical toddler. She was no longer in fear of falling down, sitting down, or trying to walk. It was a long healing process and though this was a very positive procedure there was a downfall of it all. Tobyn which didn’t have a problem with this before now had to be Cathed every four hours. They say this is something that could come back on her own but we have not seen a full recovery of this yet. Tobyn has had four therapy sessions since her procedure and is trying to walk with her walker more and more. She has what they call AFOS for her legs to help with support of the lower legs that do not have the feeling like other children. Our therapist believes she will not need these long since she is showing signs of feeling in her ankles and feet. September 7th Tobyn had her first follow up at the Spina Bifida clinic at chop since her procedure. The doctor had her try out their walker which is a lot lighter than ours and she just took off in it! She was so happy and felt so confident and independent in this walker. The doctor stated she would be fully walking in 6 months at her next appointment. We are proud to say that in March she was not only walking but running into her doctor appointment!! Tobyn is an absolute angel and touches everyone she comes in contact with. She is always smiling at strangers and giving them a high five or fist bump. She has been an absolute miracle baby!
Our Team
Our Mission
Our Team
Our team is made up of highly motivated and dedicated individuals who are passionate about making a difference in the lives of the families and children diagnosed with Spina Bifida. From our volunteers, to our board members, everyone at Tobyn's Triumph is committed to our mission and the children we serve.
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Help Our Cause
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Contact Us
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Tobyn's Triumph
Hours
Open today | 09:00 am – 05:00 pm |
