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first things first~our battle for a shunt placement

Posted Oct 02 2009 3:07pm
I'd mentioned in a previous post that I had immediately inquired into the possibility of Brayden having a shunt placed. It was blatantly obvious that his head was disproportionately large at birth (hence the planned turned emergency c-section), yet the dr's did not at first agree that it needed to be done. In fact, I was told that it was a senseless surgery and the possibilities of him having an adverse reaction to the anesthesia and not surviving were greater than the chances of it making a difference in his prognosis. We also had been convinced to fill out "DO NOT RESUSCITATE" papers (DNR) upon being discharged from the hospital in to hospice care...which turned into another obstacle to face. And looking through a momma's eyes, I didn't realize the real necessity for the shunt. To me he was my beautiful baby, so aside from that I guess I didn't truly notice how extremely quickly his head grew after his birth. The exact numbers escape me, but lets just say it alarmed his wonderful pediatrician enough to push forward with a new neurosurgeon referral.
June 30, 2008 bday----->
Not all hydran children experience the fluid build-up (hydrocephalus) that Bray did. Some actually have the opposite with a condition known as microcephaly, in which their heads are far below the typical growth curve. In any instance, I learned the first of the many important lessons I've learned thus far on this journey...don't ever accept any doctor's word as final. If you think something is just not right, push the issue until the bitter end. Luckily I had, at this point, found the Rays of Sunshine page and read these words, from the group head Barb in regards to this very topic and still keep them in my mind at every dr's visit:

1.Your child has the right to appropriate, caring medical treatment.
2. Your child has the right to be treated first as a child, not as a diagnosis.
3. You have the right to be involved in all aspects of your child’s treatment.
4. You have the right to change physicians should the attitudes and opinions of a particular Dr. not coincide with your goals for your child.
5. You have the right to keep looking for a suitable physician for your child
6. You have the right to ask questions about proposed treatment, procedures or medications.
7. You have the right and ultimate decision when being approached about end of life treatment options.
8. You have the right to say no to a DNR (do not resuscitate order), or medications that may hasten the death of your child.
9. You have the right to be a pain in the …….as you seek appropriate treatment or care for your child

When dealing with the medical profession there are a few things to remember.

1. Most Drs see very few children with hydranencephaly. Most likely your child will the first for your Dr.
2. Due to their lack of exposure the only knowledge many Drs. Have of hydranencephaly is what they read in a textbook. They have no knowledge of how a child can develop and thrive in a loving stimulating family.
3. Most Drs. only see your child and others with hydranencephaly for short periods of time when they are ill or needing treatment for something or other. Therefore they may not have accurate pictures of your child.
4. Drs. tend to see our children as having lots “wrong” as they compare them to typical children. We assess our child’s condition by comparing them to themselves. For example: You take your child to the emergency room for a respiratory infection. You tell the staff what is different from usual for your child. The staff just seem to see all the things that are “wrong” rather than just focusing on treating your child’s condition.
5. Drs. often allow their own value system or feelings to “take over”. i.e.; If the Dr. has the opinion personally that children with conditions such as Hydranencephaly have a very low quality of life that will be reflected in their treatment suggestions.
6. You may hear Drs or other professionals say things like “parents see what they want to see” or ‘you need to face reality” when talking about things your child can do. Don’t (or try not to) allow them to get you down. Remember, parents know their children the best. If you see that your child can do something, then continue to encourage him/her and ignore the Drs. Once again, you need to be your child’s voice and prime cheerleader and interpreter when encountering negative opinions.

We were somewhat fortunate, if you can call it that, that the CSF built up rather fast, but in some cases I'm told it's nearly undetectable. I later learned that it is one of the main causes of irritability in infants with any kind of brain trauma, since it caused such great pain and discomfort...I realized the surgery was a must, and was saddened by the pain and discomfort my baby had possibly been in while I had been pushed aside in trying to get it done sooner.

Upon our visit to the neurologist, Bray was about a month old and the severity of the cerebrospinal fluid accumulation was so extreme that they scheduled emergency surgery the very next morning. He was admitted and had an hour and a half surgery to have a Ventriculoperitoneal Shunt placed. *let me point out, although we were sure to cancel the DNR, he survived the surgery without a problem at all*

There are a few different kinds of shunts, but Brayden's, along with most all newer versions, are adjustable with a magnet to control the flow of cerebrospinal fluid. A tiny hole was drilled into his skull and a catheter is run from the head behind the ear, down the neck and chest, and into the abdominal cavity...only 2 teeny-tiny scars are left, one on the head and one on the belly, and you barely feel the tube at all! The actual shunt site is a bit prominent at first, but it becomes much less obvious after all of the swelling goes down.

<----after shunt placement Aug.6, 2008

The one thing I wish I'd been warned of at first, was the visual aspects of the aftermath of shunt surgery. Brayden had such extreme fluid build-up that his head was comparable to jell-o, no exaggerations needed. If we moved him the slightest bit, his head continued to jiggle afterwards. His cranial bones protruded and the usual "soft spots" that a baby had were now canyons on my poor baby's head. It was scary, probably the most scary thing I've endured as of yet! Thank goodness for the supports I'd found from other hydran mommies, because they really came through at this time to assure me it was normal and it wouldn't be like that forever. And thank goodness for my wonderfully, unjudging & strong girls who loved their little brother regardless of the "alien" or "monster" comments others voiced.

I truly believe in the fact, that shunt surgery saved my son's life...not changing his prognosis or diagnosis, but at the very least it has allowed him to thrive and live a much greater "quality of life" growing stronger every day March 2009...could be all the baby food he eats!
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