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In Her Own Words: Johnna and Everett's Story

The Kerres Family

Adam, Johnna and Everett Klossing

March 2017 | by Johnna (Klossing) Kerres '09

What a difference a year can make. This time last year I was taking a pregnancy test. Today, I am the mother of a healthy four month-old little boy who loves to smile and kicks his legs like crazy. The latter part of that sentence may not sound all that special to some. However, to a mother who was told her son would never walk, every stretch and toe wiggle is a miracle.

In fact, everything about my pregnancy has been a small miracle.

After trying to conceive for about a year, my husband and I were elated when we found out we were expecting. We started to imagine what the next nine months might be like. I dreamt about nursery décor, baby showers, and all of the hospital visitors we would have. My plans certainly didn't include undergoing an experimental in-utero surgery or relocating to Texas.

Everett babyHowever, that is the beautiful thing about life. It can take you on an unexpected journey.

Our journey began when our son was diagnosed with spina bifida at 18 weeks. Spina bifida is a neural tube defect where a portion of the baby's neural tube fails to develop or close properly, causing an opening in the back and defects in the spinal cord and in the bones of the spine. Children born with spina bifida may experience mobility issues, excess cerebral spinal fluid on the brain, bowel and bladder problems, and learning difficulties.

The news was devastating.

All of the joy we had been experiencing over the last several weeks was suddenly ripped away and replaced with fear and uncertainty.

It was tough spot to be in.

While there is no cure for spina bifida, we soon found hope at Texas Children's Hospital in Houston. We learned about an experimental fetoscopic surgery that could better our son's outcome by repairing the opening in his back while he was still in the womb.

Children born with myelomeningocele, the most severe form of spina bifida, must have surgery after birth to close the opening in their back and cover up their exposed spinal cord. However, in 2003 doctors began a study known as the MOMS trial and started performing this surgery in-utero by making a cut in the uterus and operating on the baby. The results showed that if the repair is done while the baby is still in the womb, it can help protect the spinal cord. By protecting the spinal cord from further damage, leg movement can be preserved and the need for a shunt is cut in half. A shunt is a hose-like device that is surgically placed in the brain to help move excess cerebral spinal fluid to another area of the body. The majority of children who have a postnatal repair need a shunt.

Within a few weeks we were flying down to Texas Children's Hospital in Houston to meet with the fetal surgery team and see if we were candidates.

I felt very scared.

While there are several fetal centers across the country performing open in-utero surgery for spina bifida, we chose to meet with the fetal team at Texas Children's because they are the only hospital in the country regularly doing the surgery fetoscopically. This method is less invasive for the mother and puts less strain on the uterus. It also enables mothers to deliver naturally. Those that have the open version of this surgery must deliver via a scheduled c-section by 37 weeks and and I wanted to do what would be best for our son. We just didn't know yet what that would be.

It was a grueling two days of meetings, exams, and imaging. To be honest, it was overwhelming. There was so much information to take in. However, after being informed we were excellent candidates and weighing all the risks, benefits, and sacrifices, we knew it was the right path for us.

The surgery had to be performed between 24-26 weeks into the pregnancy, so we returned home long enough to settle our affairs and prep for a 4-month stay in Houston. Due to the risks involved, the medical team requires patients to stay within 15 minutes of the hospital until delivery. The surgery is also part of an ongoing study. We were number 19.

On June 6th medical teams from Stanford, Johns Hopkins, Barcelona, and France observed as a team of doctors removed my uterus and inserted two small ports. Through these two small incisions, they were able to operate on our baby using scopes and close the opening in his back, protecting his spinal cord from further damage. Although he was only the size of a pop can at the time, our son showed us his great strength and bravery!

The process included draining my amniotic fluid and filling my uterus with C02 gas, so they had room to work. My little boy also got a shot to put him to sleep during his portion of the operation.

When doctors were finished making the repair, they put a saline solution and some antibiotics back into my uterus. Within 24 - 48 hours that solution recycles back into normal amniotic fluid. From what I have been told, they finished up by putting my uterus back and stitching up my C-section-like incision.

The actual surgery took about 4 hours and our bodies both handled it very well. I spent the next six days in the hospital recovering and being closely monitored for any complications. One major risk of the surgery is early labor. At the time of my operation, the average delivery post surgery was 35.5 weeks. To keep my uterus as relaxed as possible, the epidural placed during surgery stayed in for three days and I was given a drug called magnesium sulfate. My baby's heartbeat was also monitored 24/7. Listening to it pitter-patter is a memory I will always cherish. It was reassuring to know he was okay.

After surgery, my husband and I lived in the Houston Ronald McDonald House. The kindness and generosity we felt there was life changing. I was placed on modified bed rest and we passed the time by going to our weekly appointments/sonograms and bonding with the other families. Many of our family members and friends also flew down to visit us. The support we received from everyone, including our employers, was overwhelming. It helped make treatment possible. This may sound odd, but with the exception of surgery, I was also very fortunate to experience an easy pregnancy.

At 39 weeks and 1 day, Everett John Kerres came into the world at 5:01 pm, weighing 6 lbs and 7 oz. He was 19 inches long and absolutely perfect! I was even able to have a natural delivery, which was a pretty big deal. It's hard to put into words what that moment felt like. As the doctors were holding him up, he shifted his deep blue eyes and looked right into mine. My heart might as well have exploded. I felt so much love.

Everett spent one week in the NICU and boarded his first flight at only 8-days-old. It was my 29th birthday and the best present I ever received.

During our diagnosis we were given a very bleak outlook, but since coming home Everett has been thriving. He has not needed a shunt and has full movement of his legs. His right foot is clubbed, but treatment has been going very well. He looks pretty adorable in his special shoes too. We are blessed that he is a very laid back little boy who loves to smile! He is always alert and learning so quickly. While Everett will face some challenges, every moment I am reminded what a miracle he is and how far medicine has come.

As a small town girl from Reynolds, IL, never would I have imagined that my little boy and I would be undergoing an experimental surgery and contributing to medical research that may shape the future. As part of the study, Everett will have check-ups in Texas until he is 18-years-old. He is only 4-months-old and he has already made a big impact in the world. I look forward to watching him grow and continue to defy the odds.

surgery everett in surgery

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