A Blessing in Disguise: Madi

Written by her mom, Debra

Appeared in the foundation's newsletter, LIFE~LINE, Winter 1999

On Sunday, April 27, 1997 at 2:07 p.m., our family was blessed with a beautiful little girl, who we named months earlier. Her name Madison Claire. Her delivery was very much planned with the high-risk maternity doctors. However, she DID surprise us, and the doctors, by arriving one week earlier than expected and entered the world very quickly. Why do you ask "high-risk maternity doctors"? To answer this question, we need to go back a few months...

My pregnancy was progressing without any complications or complaints. I had taken the Triple Marker Test, which came back "normal" and which relieved our concern "maybe our baby would test positive for downs syndrome or one of the other deformities." A routine ultrasound was scheduled for January 8, 1997. The test went well. We decided not to find out the sex of our baby. And I went home to play with our 18 month old daughter, Tamra Kaye. About 45 minutes later, the phone rang. It was Beth, my doctor. She said that she had received a call from the Radiologist about the ultrasound. In short, he had detected an abnormality in the size of her left and right ventricles, which lead him to believe our baby, had "Hydrocephalus". My first reaction was - "my heart stopped." I asked "What IS Hydrocephalus???" Beth told me what it was and said that she was referring us to specialists After the phone call, I sat crying - not knowing what to do, wondering what IT really was, and crying that we did not have a 'perfect' child growing inside me. I called my husband, Jeff, at work. He was in shock, too.

In a matter of minutes, our lives went from being comfortable, healthy and happy to being that of panic, uncertainty and fear. We called Jeff's (my husband) parents, who are doctors, to get more information about hydrocephalus and what lied ahead for our baby and us. Unfortunately, no one really had experience knowing someone with hydrocephalus. So, we were left it the dark, until we met with the Specialists.

That was a new facet in our lives now - Specialists! We met with the High-Risk Maternity Doctors and Radiologists, who performed a 2 1/2 hour ultrasound on me. "Our baby was not cooperating. She kept moving around. We were given all the pertinent information about our baby's situation, and the risks. We decided to have an amniocentesis, so as to rule out any other complications or deformities. And we decided to find out the sex of our baby. During this initial Specialists visit, we also met with the Pediatric Neurosurgeon. He explained hydrocephalus and the shunt surgery in detail, and even showed us the tubing that he would put in our baby. "It was amazing what they can do today," I thought the doctor gave us hope when he said that "our baby could possibly grow out of the hydrocephalus by the time she was born and not need a shunt" I believe that this knowledge kept my spirit lifted and enabled me to concentrate on taking care of myself during the pregnancy, so that our baby had the best chance possible.

Jumping ahead 3 months to Madison's birth - the only unusual thing about her delivery was the amount of doctors and nurses in our delivery room - 13! I delivered her naturally (in much pain, I should say) with High-Risk Maternity and Neonatal doctors in attendance. Madi was 'healthy' and her apgars were good. I was able to hold and nurse her before they took her to the NICU for observation. Madison spent one week in the NICU, and on day 4 she was incubated and sedated for a MRI. The results showed that her left and right ventricles were extremely dilated and there was a blood clot of unknown origin in her right ventricle and she had a Dandy Walker Variant. Her head size was in the 95% for a newborn child.

We were allowed to go home for 3 days, and returned for her shunt placement surgery. Madison was 11/2 weeks old. It was a success, and after two days we were discharged, and sent home to start loving and caring for our now 'normal' child. At least, that is what we thought - "You have something wrong with you, the doctors operate, fix it and you go home never to have to deal with it again!" Even though, the doctor had told us she had a 55% chance that she would not need a revision. Boy, were we in for a rude awakening 11/2 months later!

In a matter of 5 days, we saw Madi's head go from 38 cm to 42 cm. Her forehead was stretched so tight it was shiny. Of course we were on vacation visiting my husband's parents in Philadelphia. So, off to Philadelphia Children's Hospital we went, for a consult with a Pediatric Neurosurgeon. As soon as he saw Madi he knew what was happening. Her shunt was malfunctioning, and she needed a revision. He assured us that she would be fine until the following week when we returned from our vacation. This is because the sutures in her skull were not sealed and could move, giving her more room to handle to pressure and extra CSF in her brain. We called Madi's neurosurgeon, gave him the news and scheduled a revision for the following week.

To make a long story shorter, Madi had a revision every ten days from the time she was 1 1/2 months old until she was 3 1/2 months. After the third revision, the REALITY of hydrocephalus set in. THIS WAS OUR NORMAL LIFE! And I needed to accept it and move on - learning how to manage it and deal with it. Though this was not an easy thing to do! Always wondering 'WHAT I DID WRONG?' The guilt of not being able to do anything to help Madi or 'FIX' her weighed heavy on in my mind and always in my thoughts. My mind kept trying to find something for me to do to deal with this helplessness. I decided to make the BEST out of this BAD situation. I thought, "maybe I can start a research fund for hydrocephalus - BUT - that takes A LOT of work!" So, on the back burner it went.

Our lives got busier and Madi got more complicated. At 3 1/2 months old, Madi needed one more revision, unfortunately, this revision did not relieve the pressure and it landed her in the hospital with one externalization of the shunt and 6 more surgeries. Unfortunately, she was affected; the failed revision compromised her vision, and left her with a right hemiparesis. After 6 weeks of multiple CAT scans, x-rays, many hours of trying to "figure out" Madi's Hydro and the placement of 2 shunts, we took her home - not knowing what the future held for her. She went into the hospital - a normal 3 1/2 month old (with hydrocephalus) and came out like a "Rag Doll." My heart was broken, and our life was uncertain - AGAIN!

Madi started with Physical Therapy and Early Intervention Services. The doctors could not tell us what to expect from her. They (we) actually had a dime prognosis for Madi. I went into the mode of "Day by Day." With a lot of support from family, friends and the medical community we pushed on trying to fit Madi into our 'normal' life. I believe now, that we were only surviving.

Three months later, Madi returned for a scheduled CAT scan. The results showed that the 2 shunts (in her right and 4th ventricles) were working. However, her left ventricle was extremely dilated, taking up most of her left hemisphere of the brain. To make matters worse, the ventricle was separated into three compartments. Not only did she need one more shunt implanted to manage her hydrocephalus, but also neuroendoscopic surgery was needed to open up the compartments. Not only did she need one more shunt implanted to manage her hydrocephalus but also neuroendoscopic surgery was needed to open up the compartments.

One week in February 1998, Madi had a slight change in her mood. We had a scheduled neurology appointment in Burlington (because we thought she was having some 'absence' seizures), so I decided to stop in at her neurosurgeon's office to mention her mood change to him and get his thoughts about this. He was not there. The neurosurgery resident said it probably was nothing, but suggested a CT scan so we could return home (2 hours away) with peace of mind. The scan showed a slight dilation of her left ventricle. We all know what that means! - another revision. She went into surgery 2 hours later. The neurosurgeon replaced her ventricular catheter, which was completely obstructed. Luckily, we had caught the malfunction in an early stage and Madi bounced back right away.

During our 2 day hospital stay, I kept thinking, 'when will this end?" and the idea of the research fund kept coming to my mind. That was when I told myself I had to either decide to 'go for it' or stop thinking about doing it. As a result, after some phone calls to the Hydrocephalus Association, Hydrocephalus Research Foundation, National Hydrocephalus Foundation, three local hospitals, and I spoke with Madi's neurosurgeon about my idea. With the support and 'nonprofit status' of the hospital, my Research Fund came to be April of 1998. Madi's Fund for Hydrocephalus Research and financial assistance for families with children hospitalized is named after our daughter, Madison Claire. She is my motivator for all the work and dedication needed to make Madi's Fund a success.

During the first year we had two Dinner & Silent Auction fundraisers; did mailings to family and friends and were given much support from local businesses, enabling us to raise over $24,500.00. Seventy percent of the money is sponsoring hydrocephalus research at the University's Medical School and public education of hydrocephalus. The remaining 30% is being donated to the Patient Family Assistance Fund at the hospital and is earmarked for helping families of pediatric patients. Madi's Fund is also providing Chuck Toporek & Kellie Robinson's book "Hydrocephalus: A Guide for Patients, Families & Friends" to new patients, and we are planning fundraisers every year.

Looking back, I am amazed at what has transpired from Madi's hydrocephalus. Madi is progressing well, has some developmental delays, and has not needed a shunt revision since February of 1998. She is a very happy little girl, who brightens our days with her big dark eyes, her giggles, and her joy for life. You would never know she has hydrocephalus, except for some developmental delays. God has blessed us with Madi - his Special Gift, and has enlightened my life with much knowledge, strength, courage, new friendships, and a new perspective on Life and what is of importance.

Looking back to that day when I was told about Madi's hydrocephalus, the only thing that I would change is 'WHO' would have the hydrocephalus - ME. Madi's hydrocephalus has been and IS a Blessing in Disguise.

The ultimate vision of Madi's Fund is to help create a healthier and better community through research, education and public knowledge of hydrocephalus. Madi's Fund is dedicated to the families and individuals affected by hydrocephalus and the medical community who care for them.

In 2004, Madi's Fund gave a $30,000 grant and is expanding fundraising and assisting other nearby areas.