I am going back and posting up-date e-mails I have sent out. The web sites mentioned here are in the side bar of the blog. I am including an ultrasound picture from the beginning of April when we first found out Devin would be born with Spina Bifida. If you look closely, you can see the fluid sac on his back.
July 13, 2007
I created the bottom portion of this e-mail at the beginning of May and can not remember who I have sent it to and who I have not, but thought this might be a good time to send it on, as we approach the delivery of our new family member. If I did not send it to you already, it was more out of a desire to not worry people.
Here is a little history of what we know going into delivery:
We found out through an ultrasound at the beginning of April that our baby would be born with Myelomeningocele (a form of Spina Bifida). The opening is thought to be at about the waist. At that time we went ahead and had an Amniocentesis done to determine if there would be any other complications. It, apparently, is common for children who are born with Spina Bifida to also have complications such as Chromosome defects or Down Syndrome. The Amniocentesis ruled out any other complications.
The Ultrasound at the beginning of April also determined that the baby had at least 1 club foot (which is apparently pretty common with Spina Bifida).
From that point out about 2 weeks, we saw the doctors mentioned below and began the process of learning more about Spina Bifida. Other than the Ultrasound findings, the pregnancy has been relatively normal (for a 3rd pregnancy with 2 prior C-sections).
They did another Ultrasound 2 1/2 weeks ago (34 weeks of pregnancy) to see how the baby was developing. One of the doctors indicated that we should ask them to see if the baby had movement at the waist. Dr. Peck did check and found that the baby would kick his/her legs. This is a good sign as the baby is not as likely to have hip development issues and more likely to be able to learn to walk with less complications. Of course, even after the baby is born, we will not know for sure how this process will go. They will do many tests the week following the baby's birth to try and determine the baby's health and needs. It is likely that the baby will have nerve damage from the waist down due to the opening in the spine.
The other thing they looked for on this Ultrasound was how much water was on the brain (Hydrocephalus). As in the previous Ultrasound, the fluid on the brain was minimal. This is a good thing as it allows the brain to develop more normally. If it is determined that the fluid on the brain is an issue, the baby will have a shunt surgically implanted within days after birth. It is usually determined within 1 month after birth if the baby will need a shunt. At this point we don't know. It is possible that our baby's fluid is so minimal that a shunt is not necessary, but that could change after the first surgery.
I go in on Tuesday, July 31st for a scheduled C-section (1 week prior to the August 6th due date). From the point the baby is born, the baby will be in the Neonatal Intensive Care Unit at Gunderson Lutheran Hospital in La Crosse, Wisconsin. Visitor's for the baby are limited to immediate family and grandparents and even these people are not allowed, if they are sick at all. According to literature I have read, the average stay of a baby with Spina Bifida is 7 to 10 days. The baby will have surgery within 24 hours to close up the opening on the spine. If a shunt in necessary, they will perform that surgery once the baby has stabilized after the back surgery. The main concern for the first month to 6 months after the baby is born is the risk for infection. Any infection could cause set backs or more permanent issues.
I am planning to stay at the hospital with the baby and Derek's Mom and sister (Elaine & Dar) will come to help us with Cooper and Allie. While I'm sure many of you will want to visit and be concerned, there are many unknowns and we ask that you be patient with us as we go through this process. We will try to keep you informed as time permits. At this point, the best thing you can give us is your prayers.
We have plenty of clothing and toys from both Cooper and Allie so please do not feel a need to buy us anything. With the club foot, I am anticipating and have read that the gown type outfits often work best. I have received many of these outfits already (both new and used) and appreciate that as I do not recall having very many of these outfits for Cooper and Allie.
Another concern that is common with children with Spina Bifida is a latex allergy. I am hoping to educate myself on this a little more in the next 2 weeks. What I do know, is that they encourage us to keep the baby's environment free of latex. If you have any questions or concerns, feel free to call. I may not have all the answers, but may be able to give you the name of a resource with answers (if I have not already given it here).
A couple of books we have either purchased or been giving are:
Children with Spina Bifida - A Parents' Guide, Edited by Marlene Lutkenhoff - This has been a good mix of information for me
Living with Spina Bifida - A Guide for Families and Professionals, Adrian Sandler - I have been cautioned about this book as it can have too much information (very medical), much of which may not pertain to our child (causing us to needlessly worry) - I suspect that this will be a good reference book after the baby is born.
Thanks for your prayers and support!
Here is a little history of what we know going into delivery:
We found out through an ultrasound at the beginning of April that our baby would be born with Myelomeningocele (a form of Spina Bifida). The opening is thought to be at about the waist. At that time we went ahead and had an Amniocentesis done to determine if there would be any other complications. It, apparently, is common for children who are born with Spina Bifida to also have complications such as Chromosome defects or Down Syndrome. The Amniocentesis ruled out any other complications.
The Ultrasound at the beginning of April also determined that the baby had at least 1 club foot (which is apparently pretty common with Spina Bifida).
From that point out about 2 weeks, we saw the doctors mentioned below and began the process of learning more about Spina Bifida. Other than the Ultrasound findings, the pregnancy has been relatively normal (for a 3rd pregnancy with 2 prior C-sections).
They did another Ultrasound 2 1/2 weeks ago (34 weeks of pregnancy) to see how the baby was developing. One of the doctors indicated that we should ask them to see if the baby had movement at the waist. Dr. Peck did check and found that the baby would kick his/her legs. This is a good sign as the baby is not as likely to have hip development issues and more likely to be able to learn to walk with less complications. Of course, even after the baby is born, we will not know for sure how this process will go. They will do many tests the week following the baby's birth to try and determine the baby's health and needs. It is likely that the baby will have nerve damage from the waist down due to the opening in the spine.
The other thing they looked for on this Ultrasound was how much water was on the brain (Hydrocephalus). As in the previous Ultrasound, the fluid on the brain was minimal. This is a good thing as it allows the brain to develop more normally. If it is determined that the fluid on the brain is an issue, the baby will have a shunt surgically implanted within days after birth. It is usually determined within 1 month after birth if the baby will need a shunt. At this point we don't know. It is possible that our baby's fluid is so minimal that a shunt is not necessary, but that could change after the first surgery.
I go in on Tuesday, July 31st for a scheduled C-section (1 week prior to the August 6th due date). From the point the baby is born, the baby will be in the Neonatal Intensive Care Unit at Gunderson Lutheran Hospital in La Crosse, Wisconsin. Visitor's for the baby are limited to immediate family and grandparents and even these people are not allowed, if they are sick at all. According to literature I have read, the average stay of a baby with Spina Bifida is 7 to 10 days. The baby will have surgery within 24 hours to close up the opening on the spine. If a shunt in necessary, they will perform that surgery once the baby has stabilized after the back surgery. The main concern for the first month to 6 months after the baby is born is the risk for infection. Any infection could cause set backs or more permanent issues.
I am planning to stay at the hospital with the baby and Derek's Mom and sister (Elaine & Dar) will come to help us with Cooper and Allie. While I'm sure many of you will want to visit and be concerned, there are many unknowns and we ask that you be patient with us as we go through this process. We will try to keep you informed as time permits. At this point, the best thing you can give us is your prayers.
We have plenty of clothing and toys from both Cooper and Allie so please do not feel a need to buy us anything. With the club foot, I am anticipating and have read that the gown type outfits often work best. I have received many of these outfits already (both new and used) and appreciate that as I do not recall having very many of these outfits for Cooper and Allie.
Another concern that is common with children with Spina Bifida is a latex allergy. I am hoping to educate myself on this a little more in the next 2 weeks. What I do know, is that they encourage us to keep the baby's environment free of latex. If you have any questions or concerns, feel free to call. I may not have all the answers, but may be able to give you the name of a resource with answers (if I have not already given it here).
A couple of books we have either purchased or been giving are:
Children with Spina Bifida - A Parents' Guide, Edited by Marlene Lutkenhoff - This has been a good mix of information for me
Living with Spina Bifida - A Guide for Families and Professionals, Adrian Sandler - I have been cautioned about this book as it can have too much information (very medical), much of which may not pertain to our child (causing us to needlessly worry) - I suspect that this will be a good reference book after the baby is born.
Thanks for your prayers and support!
Sent: Thursday, May 03, 2007 10:46
I am sending you these web sites with a caution that it can be very depressing and that much of the information is worst case scenerio. As Dr. Noack (the Pediatric doctor at Gunderson that specializes in Developmental issues with children) indicated, every single child with Spina Bifida is different and cannot be put in catagories as many of these web sites try to do. We will not know a whole lot more about the possible nerve damage the baby has until the baby is born.The doctors we have seen at Gunderson and that will most likely be involved in our lives from birth through the babies life are:
Dr. Toce (Neonatal ICU)
Dr. Noack (Pedeatrics)
Dr. Fallace (Nerosurgion)
Dr. Peck (OB/GYN - specializes in abnormal pregnancies)
Hope this helps ease your mind! "Have Hope"
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