Life with Spina Bifida

Hey there! My name is Hannah. My husband, Shane, and I met in 2009, married in 2013, and after quite some time of trying, in December 2016 we found out I was pregnant. Shane and I were so excited about this new adventure of parenthood we were about to embark on. The thought of Special Needs never really crossed our minds.

On Valentine’s Day 2017, we found out we would be having a boy, Nehemiah (A.K.A. Nehem). I was only 16 weeks pregnant, and shouldn’t have had another appointment for four more weeks, but my doctor nonchalantly asked me to come back in at three weeks. I didn’t think much of it at the time, I was just excited to get to see my son again! I went back three weeks later with my husband for our full anatomy scan with absolutely no concerns. After the ultrasound, my doctor sat us down and mentioned that she had seen some extra fluid on Nehem’s brain and wanted to send me for a level two ultrasound with a Maternal-Fetal Medicine Specialist.

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On March 13, 2017, we received the news that Nehem had a neural tube defect, more commonly known as Spina bifida. We were given the worst-case scenario, and one of the side-effects of Spina bifida the specialist really highlighted was incontinence in children. Shane and I were absolutely devastated at the time. We had no idea what this meant for our son, his future, and what it was going to take to raise a child with special needs. After voicing to the doctor that we were sure that we wanted to continue with the pregnancy, we were sent to a larger children’s hospital. The new doctors and specialists equipped Shane and me with resources, specialists, and an amazing team that helped prepare us for Nehem’s arrival.

Nehemiah joined us on July 27, 2017, and has been defying odds since. Other than using a set of bright orange wheels to get around, Nehem looks, talks, and acts like a completely typical kid - which can sometimes be confusing when I explain that even though we are approaching his third birthday, potty training isn’t on the horizon for us. Because Nehem’s spine didn’t fully form, the nerves that control his bowel and bladder never formed or are severely damaged. This is why incontinence is one of the common side effects in people with Spina Bifida.

When Aeroflow reached out to me, I immediately recognized their name from working with their breast pump department when I was pregnant with Nehem’s sister, Mary-Catherine, in 2019. All I did was fill out a form. They contacted my insurance and had the pump to my house within a week, at no cost to me! I knew that this was a great company and I was so excited to partner with them. Aeroflow Urology provides families of children with disabilities such as Spina Bifida, incontinence supplies like diapers, wipes, pull-ups, and gloves. Their Continence Care Specialists will reach out to your doctor to obtain a prescription, contact your insurance company for you, and have the supplies sent right to your door!

I am so excited to spread the word about this incredible company! I have spent so much time during my lunch breaks on the phone with medical supply companies because our order was wrong or calling my insurance company to find out what supplies are covered. Do you know how many hours could have been saved had I been using Aeroflow all along?

To find out if you qualify for incontinence supplies through Aeroflow, fill out the qualification form and let them do the rest! They make it so easy!