First, we apologize for not posting in the last week. Actually, I apologize, Susan has been encouraging me to post since we got back from Philadelphia.
In the past week and a half, I've been asked quite frequently how we're doing, and then specifically how Susan is doing. No one seems to believe me when I say that we're doing fine. It was disappointing not to be able to participate in the MOMS trial, but it does no good for us to dwell on that.
I never did explain what happened and how we reached the decision to enroll in the trial before we found out that we were not eligible. On Friday, we left CHOP impressed with the doctors and hopeful for the benefits that might accompany the surgery. The obstetrician we met with suggested that there was a possibility, based on CHOP's experience with the prenatal surgeries at CHOP before the study that Whitney could show a two level improvement. In other words, the effects of her spina bifida on her lower limbs would be like someone with a spinal lesion at the fifth lumbar vertebrae instead of the third (which is where Whitney's lesion is). Practically speaking that's the difference between walking until puberty with full leg braces and in a wheelchair thereafter to walking for her entire life with ankle braces. That said, we were very concerned about the possibility that if we had the surgery, Whitney could be born extremely premature. CHOP had carefully explained all the risks associated with prematurity, and they are exceedingly frightening. As an aside, I now have an immense sympathy for parents whose babies are born before the 30th week.
We spent much of the day Saturday intentionally not talking about the surgery because we both needed time to process the information we received. For those of you who don't know us well, Susan and I process information differently. I tend to be more logical and reach a decision faster (although I am more prone to change my mind) while Susan tends to ponder things over a longer peroid and then reach a firm decision. Susan and I agonized over whether we could handle opting into the study and then losing Whitney or causing her even more severe problems. More generally, we wrestled with whether it was God's will for us and Whitney to participate in the study.
To fathom God's will in a situation like this was not easy--we were considering an elective surgical procedure that could kill Whitney to improve her life. It's a little easier to accept the risk of a fatal surgical outcome, I think, when the surgery is life-saving or life-lenthening and the alternative is death. Susan and I prayed and sought the advice from friends who are ministers and doctors. They told us that ultimately, we were doing what the Lord requires of us, that we seek His guidance in prayer, search the Scriptures for normative principles, and use the intellect He has given us to gather all the possible relevant information. We concluded that we were considering the surgery for the right reason, improving Whitney's quality of life; that we were not taking unnecessary or unconsidered risks; and that we were not acting contrary to God's Word or our own consciences. Ultimately, there was no "right" answer--we could have the surgery or not have the surgery without our consciences condemning us.
The hardest issue to consider was "what if Whitney dies?" Spina bifida is not typically lethal during infancy (or childhood for that matter). Would Whitney's death be a sign of God's punishment on us for making the wrong decision? How could we live with ourselves/maintain a belief in a just God if Whitney died? We reasoned that God is a just God--He does not punish us for doing things that He has not warned us are wrong. Nothing in Scripture or our consciences suggested that the surgery was morally wrong. If Whitney died as a result of the surgery, it would not be God's punishment. God also promises us that He will not give us more than we can bear, a blessing we had been experiencing ever since learning of Whitney's diagnosis and earlier when Susan's mom passed away. We decided that we could be confident that no matter what happened, God would provide for us and use whatever happened for the good of our salvation.
So then, we were left with making a decision. Susan and I concluded that we were inclined to opt into the MOMS trial. We decided to sleep on the decision and if we still felt comfortable with it in the morning, we would opt in. We prayed on Sunday night that if the Lord did not want us to proceed with MOMS, that he would not give us peace with the decision. We woke up on Monday with continued concerns but without any uneasiness about the surgery.
Of course, little did we know that 12 hours later, we would find out that the Lord had already determined at least as of Thursday that we would not participate in the trial. We were admittedly a little upset that the Lord had allowed us to go through the angst of reaching a decision about the study. But looking back, Susan and I are still thankful that God clearly revealed His will for us. We don't understand why He allowed us to go to Philadephia and agonize over whether to participate in MOMS, but we are content that He is the sovereign God, we're not.
In the end, going to Philadelphia has been a blessing. The doctors at CHOP explained Whitney's condition in far more specific and helpful ways than anyone else we have met with. They were willing to give prognoses and make predictions that allow us to appropriately set our expectations. For example, the pediatric neurosurgeon at CHOP told us that it is virtually certain that Whitney will need a shunt shortly after birth because her ventricles are already significantly enlarged. We got to experience the hospitality of the Ronald McDonald House. And we got to wrestle with a very difficult decision and learned how to apply a biblical decision-making process.
I could go on, but suffice it to say that Susan and I are happy to be home, and we're at peace with the result of our trip to Philadelphia and with Whitney's spina bifida. Sorry for the stream-of-consciousness post. I'll try to be more succinct next time.
Showing posts with label MOMS. Show all posts
Showing posts with label MOMS. Show all posts
October 19, 2007
September 25, 2007
October 3rd Departure
CHOP confirmed that we will fly out on Wednesday, October 3rd to Pennsylvania. We will be staying at the Ronald McDonald house in Camden, NJ. Ronald McDonald houses are committed to serve families of seriously ill or injured children. You can see the family rooms by clicking here. We were encouraged to find this testimonial by someone who had the prenatal surgery.
We will be staying there until October 9th. We also received confirmation that on the 8th, if we did choose to continue and we were randomized to have the prenatal surgery (50% chance), surgery would happen on Tuesday the 9th. I would be in the hospital for 5 days and then continue with 2 weeks of complete bed rest of moderate bed rest until delivery. I am not sure what their definition of 'moderate' is...
(Added by Matt): I know their definition won't be as limited as mine is.
We will be staying there until October 9th. We also received confirmation that on the 8th, if we did choose to continue and we were randomized to have the prenatal surgery (50% chance), surgery would happen on Tuesday the 9th. I would be in the hospital for 5 days and then continue with 2 weeks of complete bed rest of moderate bed rest until delivery. I am not sure what their definition of 'moderate' is...
(Added by Matt): I know their definition won't be as limited as mine is.
September 24, 2007
CHOP Called!
We spoke with the Children's Hospital of Philadelphia (CHOP) today, and started the ball rolling to go out to Philadelphia. Very encouraging. The intake people were friendly and professional, and very efficient. They'd like us to fly to Philadelphia on October 7 for the consultation. More details to follow.
In other news, I had lunch with one of my ministers today--very encouraging. He did a great job recognizing that we don't want to just talk about Whitney and spina bifida.
In other news, I had lunch with one of my ministers today--very encouraging. He did a great job recognizing that we don't want to just talk about Whitney and spina bifida.
September 23, 2007
MOMS
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.
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.
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