Within a few days of learning that Whitney has spina bifida, we learned about a clinical trial called Management Of Myelomeningocele Study or MOMS. Apparently, three hospitals have been operating to correct babies spinal lesions in utero instead of waiting until after the baby is born. The theory is that by correcting the spinal lesion while the baby is still developing, the baby may have more lower body functions and less need for a shunt.
In 2001, the National Institutes of Health funded a study to determine whether this procedure should be more widely practiced. The study is recruiting 200 women to participate. Half the women will have the in utero procedure while the other half will bear the children at term and the lesion will be corrected with the traditional procedure. Before the study started, 248 women had the in utero procedure.
We quickly learned that the study has very stringent requirements including that the surgery occur between the 19th and 25th week of gestation. (We found out that Whitney had spina bifida in the 21st week, and we are now starting the 23rd week.) We made contact with MOMS about a week later, and started learning about the complications and potential benefits from the trial. All the while, we have been praying for the Lord to show us how He wants us to proceed. He has brought doctors and women who have participated in the study into our lives to give us additional information and counsel. He has reassured us that the people who are managing the study are among the best in caring for spina bifida in the country. So far, He has kept the door wide open to participating in the study.
The Surgery
The in utero surgery involves opening Susan's uterus to cover the exposed spinal cord on Whitney's back. Specifically, one doctor would make a midline C-section incision to reach Whitney, a pediatric neurosurgeon would correct the lesion, and then the first doctor would close the uterus.
After the surgery, the woman is put on full bed rest for about a week, followed by another week and a half of moderated bed rest. All the while, the team works to avoid pre-term labor. Assuming that the baby is not born early, the baby is delivered by c-section at 37 weeks.
Some of you may have seen a photo in USA Today of the surgery where the baby boy's hand reaches out of the uterus and grabs the doctor's finger. Definitely worth seeing.
The Potential Benefits
The MOMS team is hopeful that the study will show that in utero surgery helps people with spina bifida develop improved motor function in their lower limbs, improved bladder control, diminished Chiari malformation, and less need for a shunt. They have seen some evidence of these gains in the pre-study surgeries. The most promising benefit is a possible trebling of the chance that Whitney will not need a shunt.
The Risks
To their credit, the people we have talked to at MOMS have been very honest about the risks associated with the surgery. Specifically, there is about a 5% chance of infant mortality, and a 10% chance that a baby will be born before the 30th week. The average gestation for a baby who has the surger is only 33 weeks. The risks to Susan include the normal complications from major surgery and the increased risk of miscarriage or uterine rupture in future pregnancies.
Our biggest concerns about the surgery are the possibility that we are trading possible future improvements in Whitney's quality of life for the complications related to pre-term delivery, and the risk to future pregnancies caused by the injury to Susan's uterus from the surgeries.
Logistics
We will be travelling to Philadelphia to the Children's Hospital of Philadelphia (frighteningly abbreviated "CHOP"), in the next few weeks to have a final consultation regarding the surgery. If we opt into the study after the consultation, they will randomize us to determine if we will have the surgery or go home and return to CHOP to deliver at full term.
If after we opt in, the Lord places us in the surgery group, the MOMS team will perform the surgery within a few days. We will have to remain in Philadelphia until the baby is delivered. Fortunately, the people I work for have thrown their total support behind whatever decision Susan and I are led to. If we have the surgery, I will return home while Susan recovers to pick up Fiona and a family member and then return to Philadelphia to stay with Susan until Whitney is born (in December, we hope). We plan on renting an apartment, and hope that friends and relatives will be able to stay with us to take care of Fiona while we are out there.
Please pray that we will have the wisdom to discern whether we should participate in the MOMS trial. You can click on the headline on this post for more information on MOMS.
Showing posts with label doctors. Show all posts
Showing posts with label doctors. Show all posts
September 23, 2007
Pediatric Neurosurgeon Visit
Another of our many appointments that we have had the last few weeks. This doctor would do the surgery on Whitney should we decide to stay here. His name is Dr. Stanly Skarli and a partner with Dr. Foody. They are connected with the DeVos Children's Hospital and come highly recommended. The first surgery she will have will be to cover the exposed part of her spinal cord in the first fews days after birth. We also learned that there is a strong likelihood that Whitney will need a shunt at some point due to her hydrocephalus. We were thankful for his straightforwardness with us but also obviously disappointed. (Shunts drain fluid off the brain) We learned that once a shunt is surgically implanted that you will need one for life. Also, that they need to be switched periodically for adjustments (child grows out of them), infections, malfunctions, and other complications. It looks as though our little one has many surgeries in her future.
Dr. Visit
Our OB doctor has refered us to a perinatologist or what you may call a high risk pregnancy Doctor. His name is Dr. Asad Sheikh (pronounced Shake). He is in the same office as Zuidema, Cook, etc. Little did we know that our first appoinment there would last almost 5 hours! What an emotionally exausting day. First we had a constulation and it was confirming to hear that we had done our research well. Next we had a 1 1/2 ultrasound where they checked every square inch of her to look for other related defects. We were relieved that they did not find any additonal issues. We also learned that Whitney's Spina Bifida is from L3-S1, low back, and they measured her hydrocephalus to record and track its progress. Hydrocephalus is extra spinal fluid traped in the brain. (Matt's post is much more detailed if you are thirsting for more) We left there tired but encouraged that we have a well qualified Doctor to work with.
Our next visit was for amniocentisis. Amniocetisis is when they stick a large needle in your stomoach to collect some amniotic fluid to test. The fluid is filled with the baby's chromosomes whick is quite interesting. No, they do not give you pain medication or anything. I describe it like the shot you get from the dentist that lasts about 4 seconds except this one lasts for at least 5 minuites! This is when we found out that we are having a girl and also that they have found no other abnormalities in her chromosomes. This is just another praise to add to the long list.
Our next visit was for amniocentisis. Amniocetisis is when they stick a large needle in your stomoach to collect some amniotic fluid to test. The fluid is filled with the baby's chromosomes whick is quite interesting. No, they do not give you pain medication or anything. I describe it like the shot you get from the dentist that lasts about 4 seconds except this one lasts for at least 5 minuites! This is when we found out that we are having a girl and also that they have found no other abnormalities in her chromosomes. This is just another praise to add to the long list.
September 21, 2007
The Ultrasound
A few weeks ago, the Lord let us in on a secret--our baby has spina bifida. We missed the normal quad test because we were on vacation, but the day after Labor Day, we were at the doctor's office for an ultrasound. The office had recently gotten a new 3-D machine, and we were excited to come home with the little picture. The ultrasound tech was doing the normal review--those of you who have had children know the drill:
two arms, check
legs, check
heart, check
oh, look there's the face (of course, I don't see it)
But then, as the tech is looking at the head, she says, "I see a problem."
I was devastated. For the next two or three minutes, the technician is looking at the baby's head and I'm wondering what kind of "problem" we have. It felt like an eternity, and I have absolutely no clue what she's talking about when she says, "the ventricles look a little big." I think it was another few minutes before she told us that she thought our baby has spina bifida.
"Spina bifida?" I vaguely remembered that it was some nervous system problem that we learned about in high school biology. I had no idea what it was (that would change in the next six hours). Susan and I sat silently, waiting for more information--Susan was crying, I was desperately trying not to. And I was thinking of all the worst case scenarios--is it lethal to the baby now? Will the baby live very long after birth? Will the baby make it a few months? a few years? Will the child have severe mental impairments? All the while, I was praying that the Lord would give us strength to know how to react and what to say.
The ultrasound technician finally told us that spina bifida is a defect in the spinal cord that occurs when the vertebrae don't fully close around the spinal column. The spinal column protrudes out of the spine into a sac that protrudes from the baby's back. (I'll put together a more technical post with more information later).
Twenty or so minutes later, we sat down with a gynecologist who assured us that spina bifida is not lethal, that people with spina bifida usually live "full and active" lives, and that we needed to make an appointment with the perinatologists. Little did we know that this would be the first of many new doctors we would need.
A few minutes later, Susan and I were walking out of the office. We were stunned and rather numb. When we stepped outside, the sun was shining and the weather was beautiful. I don't know if I'll ever forget the incongruence between our emotions and the beautiful weather.
two arms, check
legs, check
heart, check
oh, look there's the face (of course, I don't see it)
But then, as the tech is looking at the head, she says, "I see a problem."
I was devastated. For the next two or three minutes, the technician is looking at the baby's head and I'm wondering what kind of "problem" we have. It felt like an eternity, and I have absolutely no clue what she's talking about when she says, "the ventricles look a little big." I think it was another few minutes before she told us that she thought our baby has spina bifida.
"Spina bifida?" I vaguely remembered that it was some nervous system problem that we learned about in high school biology. I had no idea what it was (that would change in the next six hours). Susan and I sat silently, waiting for more information--Susan was crying, I was desperately trying not to. And I was thinking of all the worst case scenarios--is it lethal to the baby now? Will the baby live very long after birth? Will the baby make it a few months? a few years? Will the child have severe mental impairments? All the while, I was praying that the Lord would give us strength to know how to react and what to say.
The ultrasound technician finally told us that spina bifida is a defect in the spinal cord that occurs when the vertebrae don't fully close around the spinal column. The spinal column protrudes out of the spine into a sac that protrudes from the baby's back. (I'll put together a more technical post with more information later).
Twenty or so minutes later, we sat down with a gynecologist who assured us that spina bifida is not lethal, that people with spina bifida usually live "full and active" lives, and that we needed to make an appointment with the perinatologists. Little did we know that this would be the first of many new doctors we would need.
A few minutes later, Susan and I were walking out of the office. We were stunned and rather numb. When we stepped outside, the sun was shining and the weather was beautiful. I don't know if I'll ever forget the incongruence between our emotions and the beautiful weather.
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