Lindsey's Story

Lindsey was born normally on April 9, 1988. At seven months she had a five day menstrual period. MRI scans (see attached) showed a 2.2 x 1.6 x 1.6cm mass near the hypothalamus which activated the growth and sex hormones. Lindsey was put on Lupron to control hormones at age nine months and continued with this until age ten. At age three we realized that the ten second laughing spells she had were seizures, as they started to make her lose continence and do funny things. She was a problem child and could not tolerate any frustration at any time. An older sibling raised with the same discipline, however, did fine under our parentage. At age six Lindsey began developing rage behavior and very bad moods. Rages would last up to six hours, and bad moods could set in for days. She also began to have problems concentrating in school, whereas it was obvious in earlier days that she had better than normal ability to reason. By age nine it was all we could do to handle Lindsey, but we had also found the HH Group, and knew these things were part of the HH syndrome, not just manifestations of our parenting style.

In May of 2000, our HH Group found Professor Jeffrey Rosenfeld of Melbourne Australia, and he began doing frequent surgeries on HH kids with the "TC" [transcallosal] approach from the top of the head. At first I was very skeptical of this surgery because all of our North American doctors said it was too risky. But Rosenfeld kept turning out great results for kids who had tougher circumstances than Lindsey, who had one of the easiest times with HH of all the group. When Lindsey began to deteriorate cognitively, got tougher seizures types (tonic seizures began to show up at age 13), and her quality of life became next to nil due to rages and lack of sleep, we set up a surgery date for her. She was candidate number 26 for surgery. I felt that the folks in Australia had learned about all they could by then, and thought we better do it soon before one of them got hit by a bus. It was providential that we did. Lindsey was the last US child to be able to sign up for surgery in Australia with Rosenfeld.

We had huge concerns about flying to the other side of the earth to get major brain surgery when these guys don't even know which side of the road to drive on! However, true to what all the other HH families were saying, once we met Simon Harvey and Jeffrey Rosenfeld from Royal Children's Hospital in Melbourne, our fears were dismissed. I did find it impossible to even dwell for a moment on what they were going to do, and in the end had to insist on putting the technical details of the operation out of mind so that I could cope. I decided to leave the doctor stuff to the docs. Good decision.

Lindsey came through with flying colors since her larger tumor had a nice membrane around it, and they could get 100% of it out. Lindsey had no complications at all from surgery. We know we were so very blessed by meeting these fine folks down under.

When I got home I took Lindsey around to all the doctors who had told us not to risk the surgery to show them my new daughter. I told them that 25 other kids also had great improvement, without a single fatality or major complication! Even prominent neurosurgeons were amazed and wanted Jeffrey's procedure. We truly did get an amazing new daughter who stopped having all forms of seizures, began to learn again in school, and whose moods were normal for a teenager of 14. Lindsey began to be able to sleep better with the cessation of nocturnal seizures, and her quality of life has skyrocketed.

Currently, 16 months after surgery, Lindsey is coming off her last anticonvulsant medication. She is seizure free! She has friends that she keeps, and she does fun things, normal girl things! She is truly a new girl because the docs were able to get to the tumor and get it out.

The same miracle worker, Jeffrey Rosenfeld, came to the US and passed on his knowledge to the fine doctors at Barrow Neurological Institute in February of 2003. They are now carrying the torch of HH healing to all the kids who need it in the US, and I believe they will become the worldwide center for HH, due to their outstanding dedication and care for HH kids. Our small HH group has gone from having no way out to having a miracle cure in just three years.

I wholeheartedly admire the work Barrow has done for each family who has had surgery there, and advise each new member we get to routinely send MRI films to Phoenix for an evaluation, even if they think they are not quite ready for such a major life event as surgery. It's nice to have a backup plan, and it is SO VERY NICE to have Barrow at the center of this group for healing!