We just found out that our baby has spinal bifida

[Sarah]

My head is swimming right now. My husband and I found out from the ob's office where he told us that our new little boy would be born with this. He has us come into the office yesterday for a level 2 ultrasound after some blood test I took came back positive.

Anyway, I am really, really scared. I love this new boy so much but this is a lot to handle! We are first time parents and it took us a long time to concieve him.

I have so many questions..............will he walk, talk, go to normal school? Will he be in the hospital alot? I am going to go over to Barnes and Noble and try to pick up a book on this. Is there one that you recommend?

Thanks for any advice you can all give me.

[Holly]

Hi and welcome to BTT. Did you happen to see this thread? Maybe it could help you :)

http://spinabifidaconnection.com/showthread.php?t=44

[wendypal]

Sarah,
Wow! This is a time of the unknown. I , too was scared when I found out our little boy would be born with sb. I want to encourage you that after you have him and take him home and love him it is wonderful. My little boy is 6 years old now. He had surgery at one day old to close up the back and place the shunt. It is all very blurry. Then we took him home to his 3 other siblings and we just loved him like the rest.
He started therapy at age 2 months. Just to answer a few of your questions. Sam does walk, he definately talks, and he goes to regular school. He is very smart and well like by his peers. Sam has such a magnetic personality. He really touches everyone he meets. He is incredible. Of all my kids, he really has the best attitude and the most motivation. He is also cute as can be. I know I worried about him looking different, but he really doesn't. Most people who meet Sam don't even know he has a disability!!
Anyway, ask away with any questions you have. I know Barnes and Nobles has a book for parents living with children with sb.
Just know that all our kids have different severity, so don't let some of the things freak you out. YOur little boy may never have some of those issues.
My philosophy is to worry about things when they happen, not before.
Hope some of this helps!
Wendy P.

[kali]

Hi sarah
you just took me back in time! I have a nine year old son with sb. I know you are scared of the unknown, we all were! It does get easier. My son means the world to me, too me he is the same as any other little 9 year old boy. He can even drive me crazy as a 9 year old boy should!
kali

[Sarah]

Thanks for all the advice and support. I have read so much that my head is spinning. I am dealing so much better with all of this now!

[Rodman]

Thanks for all the advice and support. I have read so much that my head is spinning. I am dealing so much better with all of this now!

Hi Sarah my wife and I are in your shoes as I type this. "WE" found out today the same thing, Thing that gets me she had this blood test done on her last checkup, why they waited tell she came back for her next one before they told us is beyond me. Now they have to set us up appt with a specialist to see in Orlando FL. Ill keep all of you inform.

Rodman

[Barb]

Rodman-that is actually very common. I had a normal AFP test and 6 ultrasounds. His level L3 was never detected until birth. I am thankful that it happened that way for us because I don't think that I could have dealt with the level of worry that must go with knowing. If you need anything there are a bunch of parents here that can answer questions. You may hear about a fetal surgery option and I know many parents who have gone that route.
In any case, good luck and feel free to ask us ANYTHING you want!

[Barb]

Here is an article on Fetal Surgery if you are interested. There is such a debate over how useful this surgery really is but as a new parent I would certainly wanted to explore all my options. The article was first printed here: http://www.fetalcarecenter.org/fetal-surgery/spina-bifida/

Prenatal Diagnosis of Myelomeningocele

Elevation of maternal serum a-fetoprotein concentrations obtained in the first trimester of pregnancy identified 75% to 80% of pregnancies with myelomeningocele before 16 weeks of gestation. Amniocentesis is performed in at-risk cases identified by maternal serum a-fetoprotein concentration screening and amniotic fluid.


a-Fetoprotein and acetylcholinesterase elevations suggest the presence of a neural tube defect. The structural defect can be readily identified by ultrasonography by 18 to 22 weeks' gestation.
The presence of an myelomeningocele may also be suggested by the presence of a "lemon" sign, which is a scalloping of the frontal bones. A full anatomic survey should be performed to detect associated anomalies such as:

Ventriculomegaly
Chiari malformation with hindbrain herniation
Clubfoot The presence or absence and quality of leg and foot movements should be assessed, but it may be difficult to distinguish spontaneous from reflex fetal movement. Ultrafast fetal magnetic resonance imaging (MRI) provides additional anatomic detail about the myelomeningocele and the brain.

Prenatal Treatment for Myelomeningocele

The first attempted repair in utero of a myelomeningocele was reported in a letter by Bruner and colleagues in 1987, using a fetoscopic technique to apply a skin graft in two fetuses.
A full report of this experience revealed that four fetuses were operated on between 22 and 24 weeks' gestation. There were two deaths: one from chorioamnionitis, requiring delivery 1 week postoperatively, and the second from placental abruption on the day of surgery.
The two other fetuses delivered at 28 and 35 weeks' gestation. Both fetuses required ventriculoperitoneal shunting postnatally and surgery to close the defect, and it is not clear that there was any neurologic benefit. This fetoscopic approach has since been abandoned.
The first evidence of improved neurologic function from repair of Myelomeningocele in utero was reported by Adzick and coworkers in 1998. Open fetal surgical repair of a large T11 to S1 myelomeningocele was performed at 23 weeks of gestation.


Postnatally, the infant had a right clubfoot with a neurologic L4 level and a left foot with an L5 level. Postnatal MRI demonstrated resolution of the hindbrain herniation, and there was no hydrocephalus. Almost all neonates with thoracolumbar Myelomeningocele are paraplegic and require ventriculoperitoneal shunting for hydrocephalus.


The outcome in this case suggested the potential neurologic benefit of in utero repair of myelomeningocele. Subsequent experience in 10 cases, between 22 and 25 weeks, by this same group demonstrated by pre- and postoperative fetal MRI that closure of the myelomeningocele in utero reverses the hindbrain herniation of the Chiari malformation.


In addition, only 1 of the 10 required ventriculoperitoneal shunting. Bruner and colleagues reported the Vanderbilt experience at the same time with 29 cases between 24 weeks and 30 weeks.


At birth there was evidence of hindbrain herniation in only 38% of these patients compared to 95% in a postnatal comparison group. In addition, 17 of the 29 (59%) required ventriculoperitoneal shunts which compared favorably with a postnatal comparison group in which it was required in 91%.


The Children's Hospital of Philadelphia (CHOP) group has reported experience with 50 cases in which fetal mmyelomeningocele repair resulted in resolution of hindbrain herniation in 100% of cases by 6 weeks postoperatively by fetal MRI 25.


In addition, the postnatal shunt rate in these patients was 43% which is lower than the predicted shunt rate of 84% based on 297 historical controls from the Children's Hospital of Philadelphia (CHOP) Spina Bifida clinic between 1993 and 2000.


It is important to note that there were 3 fetal deaths (6%) in this series. This is a substantial mortality considering myelomeningocele is not a lethal anomaly in utero. These deaths were due to:

Fetal arrhythmia during the procedure caused by cord compression in 1
Chorioamnionitis in 1
Severe prematurity in the third The preliminary results at 3 centers, CHOP, UCSF, and Vanderbilt, led to an National-Institutes-of-Health-sponsored prospective randomized clinical trial of 200 patients comparing fetal surgery to postnatal treatment of myelomeningocele in the MOMS trial (Management of Myelomeningocele Study).


The selection criteria for the MOMS trial include:

Myelomeningocele at T1 through S1 with hindbrain herniation, maternal age greater than or equal to 18 years
Gestational age at randomization of 19 0/7 weeks to 25 6/7 weeks
A normal karyotype The exclusion criteria include:

Non-US resident
Multifetal pregnancy
Insulin dependent pre-gestational diabetes
Fetal anomaly unrelated to Myelomeningocele
Fetal kyphosis of greater than 30 degrees
History of incompetent cervix
Placenta previa
Other serious maternal medical condition
Cervix less than 20 mm by ultrasound
Obesity
Previous spontaneous singleton delivery less than 37 weeks’ gestation
Maternal-fetal Rh isoimmunization
Positive maternal human immunodeficiency virus or hepatitis B or C
No support person to stay with the mother at the center
Uterine anomaly
Fails psychosocial evaluation
Inability to comply with travel and follow up protocols The primary outcome variable of the MOMS trial is whether or not fetal repair of Myelomeningocele at 19 to 25 weeks' gestation improves outcome measured by death or the need for ventriculoperitoneal shunting at 1 year of age.


Secondary outcomes include the effect on the Chiari II malformation by neuroimaging, neuromotor status at 12 and 30 months of age. Neonatal morbidity and need for postnatal surgical interventions will also be evaluated.


In addition, the long-term psychological and reproductive consequences in mothers who undergo intrauterine repair of myelomeningocele will be compared to those in the postnatal repair group.


This trial has been open and acquiring patients for 1 1/2 years. Although recruitment has been slower than anticipated, the trial has the advantage that there is no "back door." That is, there is no other center in the US offering this procedure while the trial is being conducted. It is hoped that the results of the MOMS trial will determine if fetal intervention can improve outcomes for children with spina bifida.


The results of fetal myelomeningocele repair are difficult to evaluate, especially given the limited duration of follow-up. Although hindbrain herniation definitely is reversed, ventriculoperitoneal shunting may still be needed.


With longer follow-up time, both the Philadelphia and Nashville groups have observed a progressive rise in the number of patients requiring ventriculoperitoneal shunting. Whereas some patients in the Philadelphia series appear to have significantly improved neurologic level of function, most have not, and none of the patients in the Nashville group have shown improved neurologic function.


These results will need to be evaluated in prospective trials with 4- to 5-year follow-up to determine if fetal myelomeningocele repair is truly beneficial. This is especially important, given the fetal deaths following fetal myelomeningocele repair for this nonlethal lesion.