April 24, 2008
Conductive Learning Center
We are pretty excited to be involved in this program. It is great to connect with another place that seems to know quite a bit about spina bifida. We have added many new stretches to our list. Whitney does not seem to mind them too much. We are doing them 2-3 times per day at home and going to the center once a week to start with. Their goal for Whitney is to stay on track developmentally. This means that instead of her sitting up whenever, which could be when she is 1, they get her to sit up around 6 months like normal. The short term goal is to increase her circulation and for her to kick her legs more. The long term goal is to potty train her and have her walking with a walker. It seems to me that her goals are realistic we just need to help her reach them. I am excited to watch Whitney continue to develop and grow. I know God has big plans for her life.
April 21, 2008
Catch-up
It is time to catch everyone up on Whitney. The urologist appointment went well over all. It was a little discouraging. What it boiled down to was that there are two extremes: catheter every 4 hours the rest of her life or constant bladder infections, of which neither is good. It took me awhile to not look at the extremes and to think of it in terms that Whitney will fall somewhere in between. We will discover this overtime and in the meantime we do not have to cath her which is great news. We did discover that she does have her first bladder infection which we have begun to treat.
We also had an appointment with the plastic surgeon. This went really well. Prayers have been answered and her skull is not fusing together prematurely. For this we are very thankful. Whitney's head shape is doing great as well. Her heard was beginning to get too long as a result of being on her side for the first months of life. We have had her sleeping on a special pillow to minimize this, which she did not appreciate. She was happy to hear that she is no longer in need of it. One less thing to worry about.
The latest news is that we had Whitney assessed by the Conductive Learning Center which just happens to be 5 minutes from our home. A friend had mentioned this to us before Whitney was born but our plates were full at the time. Conductive learning is an alternative physical therapy which was founded in Hungary in 1945. It is very common in Europe and is still getting a name for itself in the US. We are still learning all that is involved but we have decided to begin the program and see how it goes. This involves going there once a week for an hour and will increase over time. They mainly work with Cerebral Palsy and Spina Bifida children to help them become as independent as possible. Our first appointment is tomorrow. We are so thankful that this is available to us near our home. There are families that have moved here and others who fly in frequently for conductive learning. Here is the link http://www.aquinas.edu/clc/
Thank you for checking up on us and keeping us in your prayers.
We also had an appointment with the plastic surgeon. This went really well. Prayers have been answered and her skull is not fusing together prematurely. For this we are very thankful. Whitney's head shape is doing great as well. Her heard was beginning to get too long as a result of being on her side for the first months of life. We have had her sleeping on a special pillow to minimize this, which she did not appreciate. She was happy to hear that she is no longer in need of it. One less thing to worry about.
The latest news is that we had Whitney assessed by the Conductive Learning Center which just happens to be 5 minutes from our home. A friend had mentioned this to us before Whitney was born but our plates were full at the time. Conductive learning is an alternative physical therapy which was founded in Hungary in 1945. It is very common in Europe and is still getting a name for itself in the US. We are still learning all that is involved but we have decided to begin the program and see how it goes. This involves going there once a week for an hour and will increase over time. They mainly work with Cerebral Palsy and Spina Bifida children to help them become as independent as possible. Our first appointment is tomorrow. We are so thankful that this is available to us near our home. There are families that have moved here and others who fly in frequently for conductive learning. Here is the link http://www.aquinas.edu/clc/
Thank you for checking up on us and keeping us in your prayers.
April 7, 2008
Wonderful
Whitney is now 3 months old and we are doing wonderful which is why we have not posted. Just to let you know, it is a good sign when we do not post. (: All is well. We did have an appointment last week with the neurosurgeon and it was very encouraging. He reminded me of the signs of shunt failure which was a good reminder. Because things have been going well I have not been stressed about her shunt and honestly do not think of it much. So, he encouraged me to continue to be observant. A healthy reminder.
Today we went to the hospital to have a renal ultrasound done. This was an ultrasound of her bladder and kidneys. I tried to 'read' the ultrasound while it was being done but unfortunately I could not decipher what I was looking at. Wednesday we will go to the urologist and he will interpret them for us. My understanding is that they are checking to see if any urine is backing up into the kidneys and if so how much. I will tell you more later this week. She has not needed a catheter up to this point so our prayer is that we would not have to begin and that her bladder and kidneys would function properly.
Today we went to the hospital to have a renal ultrasound done. This was an ultrasound of her bladder and kidneys. I tried to 'read' the ultrasound while it was being done but unfortunately I could not decipher what I was looking at. Wednesday we will go to the urologist and he will interpret them for us. My understanding is that they are checking to see if any urine is backing up into the kidneys and if so how much. I will tell you more later this week. She has not needed a catheter up to this point so our prayer is that we would not have to begin and that her bladder and kidneys would function properly.
March 19, 2008
4 years
Today marks our wedding anniversary. As we look back on the past 4 years it is amazing to see all that God has taught us through each other including this new growth experience. I think I can speak for us both in saying we are very thankful for eachother and knowing there are many challenges ahead in our marriage, dedicated to walk through them hand-n-hand. Marriage is a gift, isn't it?
March 17, 2008
Bittersweet
Whitney had her two month appointment at the pediatrician today. This means that she recieved shots. I was curious to see if or how she would react them. She did not react at all. I think she may have flinched a little with her right thigh but I could have imagined it. I wanted her to feel it so badly. When Fiona was 2 months old I remember crying because it was so sad to see her in pain and with Whitney I cried because she did not feel anything. I think that if God blesses us with another healthy child I will be happy and thankful when he or she cries.
Overall she received another positive report and for that we are very thankful. She now weighs a whooping 11 pounds and 12 ounces and is 23 inches long. This puts her in the 75th percentile in both length and weight. My many questions were answered and my mind was once again put at ease.
We have a little break again with the doctors and then we are hit hard in April. We will keep you all posted.
Overall she received another positive report and for that we are very thankful. She now weighs a whooping 11 pounds and 12 ounces and is 23 inches long. This puts her in the 75th percentile in both length and weight. My many questions were answered and my mind was once again put at ease.
We have a little break again with the doctors and then we are hit hard in April. We will keep you all posted.
March 7, 2008
Two Months Old
We pause today in thankfulness. Thankfulness to our Heavenly Father for bringing Whitney so far in two months time. He has been so good to us protecting her from every angle:
1. Back surgery
2. Shunt Surgery
3. Weeks in the hospital
4. from infection in her back incision
5. from failure of her shunt
6. from many virus' this time of year
7. from her mom's flu
8. from her sister's attacks
I am sure there are many other ways that I am forgetting. God has been so faithful to us I wonder why I still worry. We are so thankful for our little gift, Whitney.
1. Back surgery
2. Shunt Surgery
3. Weeks in the hospital
4. from infection in her back incision
5. from failure of her shunt
6. from many virus' this time of year
7. from her mom's flu
8. from her sister's attacks
I am sure there are many other ways that I am forgetting. God has been so faithful to us I wonder why I still worry. We are so thankful for our little gift, Whitney.
March 5, 2008
2 Doctor Appointments
I have been a little behind on updating you. My excuse is that I had the flu last week. Thanks for praying for Whitney's protection. We are so thankful that the virus did not spread to anyone else.
Last week we met with our plastic surgeon. Her back is looking great and there is no concern there. She also is now able to lay on her back. This is great news for Whitney's comfort. It also confirms for me that all is well with her incision. He wants to see her back next month to check her skull. He is concerned that her skull may fuse together too early. This would cause her brain to run out of room to grow. This is something that can happen when a newborn is shunted. The skull bones are somehow tricked into thinking that its job is done and fuses together.
This week we met with Whitney's neurosurgeon. He came to the same conclusion about her skull and also reassured me that this does not always happen but it is something to be aware of. This calmed my nerves about this a little. If it does fuse early we will have to have another surgery but we will pray that her skull fuses together at just the right time. Before our appointment Whitney had a ultrasound of her head and we viewed the results at the doctors office. I love technology! No more waiting 2 weeks for results. Just go down the street and have them explained as you look at them. We looked at the images from her last ultrasound right before her shunt was placed. The difference between the two was amazing. The first on had two huge black spaces where her ventricles were and in the other they we smaller than a pea. I am truly amazed.
We have next week off in the doctor appointment area. A much needed break.
Last week we met with our plastic surgeon. Her back is looking great and there is no concern there. She also is now able to lay on her back. This is great news for Whitney's comfort. It also confirms for me that all is well with her incision. He wants to see her back next month to check her skull. He is concerned that her skull may fuse together too early. This would cause her brain to run out of room to grow. This is something that can happen when a newborn is shunted. The skull bones are somehow tricked into thinking that its job is done and fuses together.
This week we met with Whitney's neurosurgeon. He came to the same conclusion about her skull and also reassured me that this does not always happen but it is something to be aware of. This calmed my nerves about this a little. If it does fuse early we will have to have another surgery but we will pray that her skull fuses together at just the right time. Before our appointment Whitney had a ultrasound of her head and we viewed the results at the doctors office. I love technology! No more waiting 2 weeks for results. Just go down the street and have them explained as you look at them. We looked at the images from her last ultrasound right before her shunt was placed. The difference between the two was amazing. The first on had two huge black spaces where her ventricles were and in the other they we smaller than a pea. I am truly amazed.
We have next week off in the doctor appointment area. A much needed break.
February 28, 2008
February: Month of Firsts
Whitney has had a big month. She has begun to roll over, smile, and sleep through the night as of Sunday the 24th. I think that being the star of the show Sunday tired her out enough to begin a great new tradition: sleeping. The baptism went wonderfully. Fiona was a little restless sitting up in the front row but with a little sweat we made it through. While we were up front Fiona wanted to be baptised as well but thankfully we started singing a song and she forgot about it. The reception was a lovely time of fellowship together, celebrating Whitney, and a chance to thank many people who have been a great support to us these past several months.
February 23, 2008
Celebration
We could not wait 5 more weeks to have a party for Whitney. So, we are bending the rules and bringing her to church on Sunday night to be baptised and have a reception after. We wanted to celebrate her birth and the gift that she is to our family. Hopefully, she does not catch any viruses flying around the sanctuary.
All is well at our home. We are settling into a nice routine. Matt will be out of town for the majority of the week next week for work so my wonderful mother-in-law is coming to save the day once again. This coming Thursday we have an appointment with Whitney's plastic surgeon. He will check her back incision and hopefully tell us that we can start laying her on her back. (Whitney tells me that she is tired of being in her bouncy seat crooked.)
All is well at our home. We are settling into a nice routine. Matt will be out of town for the majority of the week next week for work so my wonderful mother-in-law is coming to save the day once again. This coming Thursday we have an appointment with Whitney's plastic surgeon. He will check her back incision and hopefully tell us that we can start laying her on her back. (Whitney tells me that she is tired of being in her bouncy seat crooked.)
February 16, 2008
Good Report
The weeks are flying by and I can't believe Whitney is going to be 6 weeks old on Monday. We were blessed this week again by the presence of Matt's mom. She was only going to come for a few days and ended up staying the week due to weather. I love the snow!
We had an appoinment at the neurosurgeon this week. He was very encouraging and reminded me that every week and every month without an infection is a milestone. Her incisions look so good that I didn't think infection was a great risk any longer. He said that infection can fester for months and not show itself right away if bacteria got in her body during any of her surgeries. Needless to say please still pray that she is continues to be infection free. I asked many questions, as I am sure every mother does, and I was reassured on all of them. I still worry but I am not crazy about it...at least I don't think I am. We scheduled a head ultrasound for early March to check on how things are working with the shunt.
The physical therapist came for her weekly visit. As you many remember Whitney's lesion on her back was located at L-3 to L-4. This tells us aproximatly which nerves were damaged so we know what the outcome looks like is regaards to the future. She noticed that she has more movement on her left side and stated that she thought that her left side function was the equivalant of an L-5! This means that she has more nerve sensation on this side. I did not know that there was a possibility for the sides to be different but the nerve damage can be more severe to some nerves than others. We were greatly encouraged by this and look forward to seeing how else God surprises us.
We are now halfway through our incubation period at home. 6 more weeks! Please feel free to visit if you are healthy. I thrive on the adult interaction. (:
We had an appoinment at the neurosurgeon this week. He was very encouraging and reminded me that every week and every month without an infection is a milestone. Her incisions look so good that I didn't think infection was a great risk any longer. He said that infection can fester for months and not show itself right away if bacteria got in her body during any of her surgeries. Needless to say please still pray that she is continues to be infection free. I asked many questions, as I am sure every mother does, and I was reassured on all of them. I still worry but I am not crazy about it...at least I don't think I am. We scheduled a head ultrasound for early March to check on how things are working with the shunt.
The physical therapist came for her weekly visit. As you many remember Whitney's lesion on her back was located at L-3 to L-4. This tells us aproximatly which nerves were damaged so we know what the outcome looks like is regaards to the future. She noticed that she has more movement on her left side and stated that she thought that her left side function was the equivalant of an L-5! This means that she has more nerve sensation on this side. I did not know that there was a possibility for the sides to be different but the nerve damage can be more severe to some nerves than others. We were greatly encouraged by this and look forward to seeing how else God surprises us.
We are now halfway through our incubation period at home. 6 more weeks! Please feel free to visit if you are healthy. I thrive on the adult interaction. (:
February 8, 2008
Whitney Update
Whitney visited the pediatrician earlier this week. Great report. She now weighs 9 pounds, 4 ounces--she was 8 pounds, 1 ounce at birth. We are pretty excited.
Wheelchair Backflips
A friend of mine just told me that ESPN was running a story today about a teenager with spina bifida who does backflips in his wheelchair. The story is encouraging--click on the headline above to see it.
February 2, 2008
Happy Birthday Matt
Matt's birthday was Saturday. We had a small celebration for him while his mom was still here. We have been home now for two weeks. It has been wonderful to have us all under one roof and not driving back and forth every day. Whitney has adjusted well and is a very good natured little girl. She wakes up twice a night and usually lets me go right back to sleep.
Fiona is also doing well. Her daddy was home with her for the first week home and grandma came this past week to spend time with her so daddy could go back to work. I am not sure I would have made it thruogh these last two weeks without them. I have been able to rest, nap and just take care of Whitney. It has been a wonderful gift. Fiona is missing her grandma's attention this week and it appears that she is more fun than I am.
As I mentioned Matt is back to work as of Monday the 28th. He was more than ready to return and told me a few times that he did not want my job. I found this quite amusing and thankful that I do not have competition for my position at home.
Since returning home we have had seven doctor appointments. This has been much more than I anticipated. It looks like we will have an average of one per week from here plus physical therapy. The good thing about having so many is that I get out of the house. The doctors have strongly advised us not to take Whitney in public for three months. The reports we have received from these appointments have been positive and a few of them even encouraging. She is healing very well. We have had her evaluated and she does not need any braces or casts right now. This is great news and makes us very grateful. We have a physical therapist coming to our home once a week. I am so thankful that this is one appointment that comes to us. Her tone and flexon in her legs is already improving as I do the therapy daily. This is also quite an encouragment.
We continue to take things day by day as things are still quite overwheming. Thank you all for your continued prayers and encouragement.
Fiona is also doing well. Her daddy was home with her for the first week home and grandma came this past week to spend time with her so daddy could go back to work. I am not sure I would have made it thruogh these last two weeks without them. I have been able to rest, nap and just take care of Whitney. It has been a wonderful gift. Fiona is missing her grandma's attention this week and it appears that she is more fun than I am.
As I mentioned Matt is back to work as of Monday the 28th. He was more than ready to return and told me a few times that he did not want my job. I found this quite amusing and thankful that I do not have competition for my position at home.
Since returning home we have had seven doctor appointments. This has been much more than I anticipated. It looks like we will have an average of one per week from here plus physical therapy. The good thing about having so many is that I get out of the house. The doctors have strongly advised us not to take Whitney in public for three months. The reports we have received from these appointments have been positive and a few of them even encouraging. She is healing very well. We have had her evaluated and she does not need any braces or casts right now. This is great news and makes us very grateful. We have a physical therapist coming to our home once a week. I am so thankful that this is one appointment that comes to us. Her tone and flexon in her legs is already improving as I do the therapy daily. This is also quite an encouragment.
We continue to take things day by day as things are still quite overwheming. Thank you all for your continued prayers and encouragement.
January 24, 2008
Shunt Pictures
A few more pictures--this time of the shunt. The first picture is of Whitney's head before they put in the shunt. The second is after the shunt surgery. The shunt is somewhat hard to see in the picture. In person, it is pretty easy to see because it is a small ridge on the side of her head. That said, we are thankful for her head full of hair because it camouflages the shunt pretty well. The doctors have told us that after Whitney develops a thicker layer of skin and more hair, people will generally be unable to see the shunt. They also warned us that some people will make insensitive remarks about the shunt. I think those comments, whether they are about Whitney's shunt or some other aspect of Whitney's spina bifida, are going to be those kind of remarks. We pray that we will have the self-control and inspiration to respond appropriately.
January 20, 2008
Whitney's Care
Many have asked me what special care Whitney needs now that she is home. She came home with needing dressing changes on her back for 24 hours, a diaper rash, and stitches behind her right ear, above her right temple, and a few in her abdomen.
The dressing changes are no longer necessary as her back is almost completely healed. It is amazing how fast her skin has healed and how great it looks. This Thursday we will have a check up with her plastic surgeon to make sure it is healing as it should.
We are trying to get on top of her diaper rash. She has very limited control of her bowels and so she always has a dirty diaper. We did find out that her kidneys look good over all. One kidney is a grade 0, perfect and the other is a grade 2 out of 4. They say this could get better or worse with time. This also meant that we were able to leave the hospital without a catheter. We have a appointment with a urologist in April.
The stitches for her shunt should disintegrate over time and we will see that doctor this Friday. The main concerns with the shunt are infection and failure. They have given us many signs to look for but some are as simple as crying. Please pray for protection for Whitney that the shunt with not need to be revised and that there will be no infection.
We also met with a physical theripist before we left the hospital. This was very encouraging for me because now I have some thing tangible I can do to try to help her. We have many stretches to work on with her for her hips, knees, ankles, and toes. All of these joints are very stiff and she can not straighten them. There are also appointments set up for this at the Spina Bifida Clinic and there will also be a theripist who will come to our home to work with Whitney. We are so blessed to live in an area with so many resources.
The dressing changes are no longer necessary as her back is almost completely healed. It is amazing how fast her skin has healed and how great it looks. This Thursday we will have a check up with her plastic surgeon to make sure it is healing as it should.
We are trying to get on top of her diaper rash. She has very limited control of her bowels and so she always has a dirty diaper. We did find out that her kidneys look good over all. One kidney is a grade 0, perfect and the other is a grade 2 out of 4. They say this could get better or worse with time. This also meant that we were able to leave the hospital without a catheter. We have a appointment with a urologist in April.
The stitches for her shunt should disintegrate over time and we will see that doctor this Friday. The main concerns with the shunt are infection and failure. They have given us many signs to look for but some are as simple as crying. Please pray for protection for Whitney that the shunt with not need to be revised and that there will be no infection.
We also met with a physical theripist before we left the hospital. This was very encouraging for me because now I have some thing tangible I can do to try to help her. We have many stretches to work on with her for her hips, knees, ankles, and toes. All of these joints are very stiff and she can not straighten them. There are also appointments set up for this at the Spina Bifida Clinic and there will also be a theripist who will come to our home to work with Whitney. We are so blessed to live in an area with so many resources.
January 19, 2008
Home
We received a phone call yesterday around noon telling us the Whitney would be discharged. Once we got over our surprise we began to get excited. We had meetings all afternoon with what to expect with her overall care and specifically for her shunt. Thankfully, Thursday the physical therapist placed a piece of foam in her car seat with a hole cut out of it to relieve the pressure on her back. We packed up all of her things, put her in the car seat and headed home. We are also thankful we live close to the hospital as Whitney should not be on her back for more than 20 minutes at a time and only if necessary.
Last night was a bit rocky as Whitney was missing her noisy neighbors and favorite nurses but today was better. All four of us continue to adjust but I am sure it will get easier day by day.
Last night was a bit rocky as Whitney was missing her noisy neighbors and favorite nurses but today was better. All four of us continue to adjust but I am sure it will get easier day by day.
January 16, 2008
Rough Day
I think today was the hardest one we've had since Whitney was born. Last night around 5:00, we found out that Whitney would have surgery to place a shunt this morning at 8:30. The nurses suggested that we should probably get there as much before 7:30 as possible. So we were up before 6:00 and at the NICU before 7:00.
Whitney's surgery went well, and she was back in the NICU from surgery by 10:30. Whitney woke up slowly. As she woke up, she was in significant pain. She started crying uncontrollably. We tried to console her, but nothing worked. It took the nurses at least fifteen minutes to start her morphine, and it felt like an eternity before it worked. The whole time, Whitney was crying and wimpering. The feeling of helplessness was heartbreaking. It was the worst experience we have had since finding out about Whitney's spina bifida.
They finally got Whitney's pain under control, and she snuggled with Susan all afternoon.
Whitney's surgery went well, and she was back in the NICU from surgery by 10:30. Whitney woke up slowly. As she woke up, she was in significant pain. She started crying uncontrollably. We tried to console her, but nothing worked. It took the nurses at least fifteen minutes to start her morphine, and it felt like an eternity before it worked. The whole time, Whitney was crying and wimpering. The feeling of helplessness was heartbreaking. It was the worst experience we have had since finding out about Whitney's spina bifida.
They finally got Whitney's pain under control, and she snuggled with Susan all afternoon.
Shunts, Surgery & Such
The shunt placement surgery this morning was successful. Our pediatric neurosurgeon placed a roughly two inch long shunt in Whitney's head above and slightly in front of her right ear. Now we pray that the shunt functions properly and does not become infected. Please praise God for a successful placement and petition Him that the shunt both works and is long-lived.
For more than you ever really wanted to know about shunts, and how we got to this point, please keep reading.
What is a shunt?
A shunt is a straw like device that is placed beneath the scalp and inserted into the brain to relieve pressure in the brain. Whitney, like many kids with the myelomeningocele form of spina bifida has hydrocephalus (sometime referred to as "water on the brain," although this term is not accurate). Hydrocephalus develops as cerebro-spinal fluid is unable to properly circulate from the ventricles inside the brain up and down the spinal cord and around the outside of the brain. As a result, the cerebro-spinal fluid builds up in the ventricles, placing pressure on the brain. Shunts are designed to relieve the pressure.
To my understanding, the shunt has three parts: the portion that is inserted into the ventricles, a valve, and a catheter. The three pieces fit together like a flexible child's straw with loops (the ones my parents only let us use on very rare occasions). The piece that extends into the brain in infants is inserted between sections of the skull. The valve is attached to the former piece and is outside the skull. The catheter attaches to the other side of the valve and runs under the skin to the abdomen. The catheter empties into the abdomen through a small incision. The upper portion of the shunt is visible as a raised area on the head. The cathether is about the thickness of a spaghetti noodle and is not visible.
The valve in the shunt opens when the pressure in the ventricles increases to a certain point and bleeds off cerebro-spinal fluid into the catheter (and consequently into the abdomen) until the pressure is reduced to a point where the valve closes. The cerebro-spinal fluid is reabsorbed by the body from the abdomen.
Shunts have a limited lifespan. According to the Spina Bifida Association of America, "[a]bout 40% of shunts will malfunction and need to be changed (or revised) within 1 year of insertion, 60% will require a revision within 5 years, and 80-85% within 10 years. About 20% will require multiple revisions in their lifetime." Typically, only the top portions of the shunt need to be replaced.
Why Did Whitney Need A Shunt?
Approximately 80% of children with a myelomeningocele require a shunt. When we were at CHOP, the chief neurosurgeon told us that he was positive that Whitney would require a shunt based on the swelling of her ventricles at 24 weeks. Since that time, ultrasounds have shown that Whitney's ventricles continued to grow.
Our pediatric neurosurgeon in Grand Rapids is very conservative. Although we encouraged him to implant a shunt and close the lesion on Whitney's back at the same time, he wanted to wait to see if the hydrocephalus subsided after the closure before deciding to install a shunt. During the last week, Whitney's head size increase by two centimeters, suggesting that her ventricles were continuing to expand. The soft spots on Whitney's head were tense from the internal pressure, and her eyes rolled slightly downward (called "sunset eyes"). Finally, Whitney had CT scans last Wednesday (1/9) and on Monday (1/14). The CT scan definitively showed that the ventricles had grown.
We had been told to plan for a shunt surgery on Monday, then Wednesday (today), then Friday. Early yesterday evening, the pediatric neurosurgeon told us that he would perform the surgery this morning at 8:30. Again, we didn't have much time to prepare.
After the surgery, the surgeon reported that Whitney's cerebrospinal fluid was under significant pressure. This was reassuring because it demonstrated the necessity of the surgery. Whitney is currently recovering in the NICU.
For more than you ever really wanted to know about shunts, and how we got to this point, please keep reading.
What is a shunt?
A shunt is a straw like device that is placed beneath the scalp and inserted into the brain to relieve pressure in the brain. Whitney, like many kids with the myelomeningocele form of spina bifida has hydrocephalus (sometime referred to as "water on the brain," although this term is not accurate). Hydrocephalus develops as cerebro-spinal fluid is unable to properly circulate from the ventricles inside the brain up and down the spinal cord and around the outside of the brain. As a result, the cerebro-spinal fluid builds up in the ventricles, placing pressure on the brain. Shunts are designed to relieve the pressure.
To my understanding, the shunt has three parts: the portion that is inserted into the ventricles, a valve, and a catheter. The three pieces fit together like a flexible child's straw with loops (the ones my parents only let us use on very rare occasions). The piece that extends into the brain in infants is inserted between sections of the skull. The valve is attached to the former piece and is outside the skull. The catheter attaches to the other side of the valve and runs under the skin to the abdomen. The catheter empties into the abdomen through a small incision. The upper portion of the shunt is visible as a raised area on the head. The cathether is about the thickness of a spaghetti noodle and is not visible.
The valve in the shunt opens when the pressure in the ventricles increases to a certain point and bleeds off cerebro-spinal fluid into the catheter (and consequently into the abdomen) until the pressure is reduced to a point where the valve closes. The cerebro-spinal fluid is reabsorbed by the body from the abdomen.
Shunts have a limited lifespan. According to the Spina Bifida Association of America, "[a]bout 40% of shunts will malfunction and need to be changed (or revised) within 1 year of insertion, 60% will require a revision within 5 years, and 80-85% within 10 years. About 20% will require multiple revisions in their lifetime." Typically, only the top portions of the shunt need to be replaced.
Why Did Whitney Need A Shunt?
Approximately 80% of children with a myelomeningocele require a shunt. When we were at CHOP, the chief neurosurgeon told us that he was positive that Whitney would require a shunt based on the swelling of her ventricles at 24 weeks. Since that time, ultrasounds have shown that Whitney's ventricles continued to grow.
Our pediatric neurosurgeon in Grand Rapids is very conservative. Although we encouraged him to implant a shunt and close the lesion on Whitney's back at the same time, he wanted to wait to see if the hydrocephalus subsided after the closure before deciding to install a shunt. During the last week, Whitney's head size increase by two centimeters, suggesting that her ventricles were continuing to expand. The soft spots on Whitney's head were tense from the internal pressure, and her eyes rolled slightly downward (called "sunset eyes"). Finally, Whitney had CT scans last Wednesday (1/9) and on Monday (1/14). The CT scan definitively showed that the ventricles had grown.
We had been told to plan for a shunt surgery on Monday, then Wednesday (today), then Friday. Early yesterday evening, the pediatric neurosurgeon told us that he would perform the surgery this morning at 8:30. Again, we didn't have much time to prepare.
After the surgery, the surgeon reported that Whitney's cerebrospinal fluid was under significant pressure. This was reassuring because it demonstrated the necessity of the surgery. Whitney is currently recovering in the NICU.
January 15, 2008
Shunt Surgery
After a week of waiting, our pediatric neurosurgeon had seen enough evidence that Whitney's hydrocephalus was severe enough that it required a shunt. Whitney's surgery is scheduled for tomorrow morning at 8:30.
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