This article is the first in a series written by Carolina, Mariana’s mother. Carolina hopes that sharing their story will increase awareness.
Ever since Mariana was born, her life has been a series of challenges, and fights. What can I say, it has been quite a journey. But, first I want to say that I am so grateful and feel so honored that I get to be her mother. She is a sweet little angel. Because my husband and I love her so much it has been an emotional journey to watch her suffer.
Here is a glimpse at our world for the past three years:
Mariana was born with a few medical conditions. The first one we found out about is called hydrocephalus, when she was six months old.
With hydrocephalus, the spinal fluid that normally flows around our nervous system and is absorbed by the brain gets interrupted somewhere. In Mariana’s case, her brain wasn’t absorbing the fluid properly, and so pressure was building up inside her skull. During the first six months Mariana’s head grew larger and larger and her pediatrician insisted that we wait things out. Mariana couldn’t even lift her head it was so large.
At six months, we finally were referred to Children’s on a Tuesday for an MRI. We met with a neurosurgeon the next day (Wednesday) and she said that Mariana’s brain was under a lot of pressure, and she had to have surgery right away to relieve it. Mariana had her first brain surgery on Thursday. The neurosurgeon placed a shunt, which is basically a tube from her brain that empties into her abdomen. Once her shunt was placed she was finally able to work on lifting her head, but had to start physical therapy once a week to try to catch up on her motor skills.
The problem with a shunt is that it can fail at any time if the tube gets clogged, and if not treated in time the pressure that builds up can kill her. Virtually all shunts fail within 10 years, many times within the first two years.
Sometimes the symptoms can be very sudden and sometimes there is more time to react. This is a forever worry, part of what makes it difficult. It never goes away, the shunt is always there. The symptoms are similar to a cold (but they get worse) so it is difficult to know the difference before it is too late, especially if it is a little child and they can’t tell you how they feel. We have been lucky so far. No shunt failures yet. We know a girl who had 24 brain surgeries by the age of 14.
We have gone into the ER several times because of possible shunt failure. Symptoms- Lots of throwing up, lethargy, headaches…Basically when she has a cold it is like, “Umm… Shoot, Cold? Shunt?”
Then we found out that her skull was fusing.
Normally, our skull doesn’t fuse until later in life until our brain is done growing. Well, within a few months hers was all fused. But, thankfully since her head had gotten so large they didn’t need to open her skull to create room for the brain to grow. So we have gotten to skip that surgery so far.
Because she had a shunt, it meant that she now had to see a whole group of doctors every six months or every year: The eye doctor, the ear nose and throat doctor, the dentist, the neural surgeon, the plastic surgeon, the hearing doctor, her regular pediatrician, and the physical therapist. One time at her eye doctor visit, her doctor suggested that she might have Cruzons or Pfeiffer syndrome. So we went to Children’s to get that checked. Now the geneticist was part of our team too.
Check back soon for the next part in the series of Mariana’s Medical Journey
Carolina has founded a non-profit(Born a Hero, Pfeiffer’s Health and Social Issues Awareness) to help other kids like Mariana. Donations may be made out to Born A Hero, and mailed to 3425 183RD PL SE, BOTHELL, WA, 98012