One mother’s story: Staying strong for my daughter’s brain surgery

Photo credit: Stacey Guptill
Photo credit: Stacey Guptill

Maddie, our third child of four and our smallest, always seemed to be fighting off some type of illness. When she hit puberty, her health struggles seemed to get worse. I kept telling my husband and Maddie’s primary care physician something was not right, but I couldn’t quite put my finger on it.

Maddie knew, too. She had hand tremors, her grades started to slip, and my otherwise well-liked, social daughter was becoming very withdrawn. A sleepover with a friend was not even worth it for her — it would sap her energy and set her back a few days in school. She spent most of her time at home, lying in bed, trying to cope with her headaches and fatigue. There were mornings before school that she’d make it to the top of the stairs with her backpack on and then just lie down on the floor. She would leave for school dragging, and I would just sob.

Finally, after visiting her pediatrician and then the Boston Children’s Hospital Brain Center, we were referred to Dr. Mark Proctor. He diagnosed Maddie with a Chiari malformation, an abnormality that puts pressure on the spinal cord and the lower part of the brain. We were not new to this condition: Maddie’s younger brother Tanner had received the same diagnosis a few years earlier. (So far, his is not as prominent as Maddie’s, and he has not required surgery.)

Getting answers answers about Maddie’s Chiari malformation

Chiari malformation
I started to do a lot of research and the puzzle pieces started to fall together. We learned Maddie’s chronic upper respiratory infections, weakened immune system and gastrointestinal problems can be signs of a Chiari malformation.

Our advice to other parents
  • Follow your gut! If you have an intuition, follow it. No one knows your child like you do.
  • Find a doctor who respects your relationship with your child.
  • If you come to Boston Children’s, take a moment to look around. Know that you’re not alone.

As parents, we felt an enormous amount of relief to have a diagnosis. Dr. Proctor recommended surgery to relieve the pressure on Maddie’s brain and spinal cord and re-establish normal fluid circulation in the area. He told us Maddie’s Chiari malformation would never get better or go away; it could only get worse and any damage done from waiting could not be reversed.

The thought of shaving our beautiful daughter’s head, preparing her for brain surgery and leaving her with a five-inch scar on the back of her head literally made me weak.

It seemed like our world and family was falling apart. It was so important to stay strong for Maddie, so we tried hard to downplay the situation for her sake. If she had questions, we were open for discussion, but we followed her lead.

Ultimately, we told Maddie that at the age of 16, she was old enough to weigh in on this decision, and it was important for us to know how she felt. She told us, “I don’t want to make the final decision. You are the parents, you decide.”

Going ahead with Maddie’s brain surgery

It the hardest decision her father and I ever had to make.

But we knew. She wanted us to tell her she needed brain surgery. It was time for her to get better and stronger, and she was willing to go through it to get back to a more normal way of life. It was then that we realized how much she was going through, yet remaining so stoic through it all. Maddie was the strong one — we got our strength from her!

Maddie and her father share a hug.
Maddie and her father share a hug.

The moment when we first saw her after surgery was the toughest part of all. She had held it together with the nurses, but once she saw us, she cried and mumbled, “It hurts, it hurts!”

We were in tears, as we sat trying to console her just hours after brain surgery, and she kept saying, “I’m sorry, I’m sorry.” Seeing her parents upset was more painful to her than the physical pain of her recovery. That was the hardest part for us as parents.

The next five days were pure torture. Nothing can really prepare you to watch your child suffer. It felt as though time was standing still, and she was never going to get back to herself. There were times that we doubted the decision we made.

But on day six, Maddie woke up, wanted to look in the mirror and asked to look at her new iPhone (a special surprise gift). Something clicked — we saw a glimpse of the girl we had not seen for quite some time. She was back!

We were released later that afternoon, and Maddie has never looked back.

Maddie and her brother Garrett
Maddie and her brother Garrett

After two weeks at home she came to me with a confession: “Mom, I did two cartwheels in my room.” I replied, “You did what??? Did it hurt??” She said, “If it did, I would have never done two of them!” To this day — as she describes in her own blog — she is still conquering things that would have never been possible without this surgery.

Learn more about the Brain Center at Boston Children’s.

About the blogger: Pam Holt and her husband Brian are parents to four children: Brittany (26), Garrett (21) Maddie (19) and Tanner (14). Married for 28 years, they have resided in Seabrook, New Hampshire, for the past 20 years.