Thursday, February 10, 2011

Ortho Update

Ruth had a check-up at Scottish Rite for ortho this week. Two of her sisters tagged along to this appointment, they call it the "Fun Hospital".

Since last week was iced over, we had to reschedule for this week. Well, so did everyone else. After about 2 hours after our appointment time, we finally saw the doctor. He looked her over, and said she is still doing great. Only 6 more weeks full time brace wearing, then only at night time!!

After we saw him, we head down to orthotics to get her braces checked. At that point they were at lunch, so me and the girls headed to the cafeteria. They thought it was the neatest thing ever, didn't hurt that they ate pizza and chocolate cake!

So after lunch we headed BACK to orthotics. She has grown some so he expanded the bar a bit. Shoes are still fitting fine (size 00 - tiny feet!).

We go back in 6 weeks - same week (but not same day) as her urology checkup. No more Scottish Rite appointments until then! That's a big change from the every week appointments we've had for the last few months :-)

MOM Study Results: Fetal Surgery may improve outcome for spina bifida

It has been ALL OVER the news since yesterday evening, the study results were published! And they found that fetal surgery closure significantly improved the outcomes of those with spina bifida! Major benefits listed were improved mobility, and decreased need for a shunt.

The study was originally designed to have 200 enrollments, but the results were positive enough that they stopped it at 183. They will continue following all participants at 1 year and 30 months. They are also applying for funding that will follow the participants at an older age as well.

I know it was His plan for Ruth to have the fetal surgery. I do believe Ruth benefited from the fetal surgery. The fetal surgery is NOT a cure, and she will always have spina bifida and struggle with all the many things that goes with it, perhaps this one little (HUGE!) thing, will make one part of that a little easier on her.

You can read all about it:
New England Journal of Medicine - this is the official published results.

CNN: Study: Major benefits for spina bifida surgery in the womb

NPR: Fetal Surgery Better For Kids With Spine Defect

ABC: Spina Bifida: Babies May Do Better With Corrective Surgery Before Birth

NBC: Surgery in womb spares babies worst effects of spine defect

My thoughts:

It was not an easy decision to make. I believe we (we being parents of Spina Bifida babies) all made the decision based on the information we had, and there will always be "what if's", on either side of the coin, whether or not one chose to pursue the fetal surgery.

The surgery, being in a study, also excluded many that could have benefited by the surgery, and I am glad it is now an elective surgery that is available to those that choose it.

  • It took over 7 years to complete. Many babies have been born in those 7 years that could have benefited by the fetal surgery.

  • The requirements of the trial to relocate and ALSO have an extra support person for 3+ months was not possible for many. We were fortunate to have a great support system, with many friends and family that rallied to help us.

  • Many did not qualify because they had to keep the study participants as similar as possible, that would have otherwise benefited by the fetal surgery.

  • If you were one of the few that DID qualify, you were only given a 50/50 chance to get the fetal surgery because of the randomization.

photo from the CNN story

I do understand why it was done this way. It was very important to determine if this surgery would be worth the risk, and if they allowed the surgery to be done outside of the study, no one would agree to a "flip of the coin."

The surgery was still in a medical trial, because it was RISKY, and spina bifida is not considered a fatal birth defect. The surgery is done between 19 and 26 weeks gestation, if something goes wrong, most babies cannot survive if born then. That risk is very scary, and very real. She was 24 weeks at the time of the surgery, and probably would not have survived if born. While that didn't happen, she was still born very early at 31 weeks. We were very fortunate she did not suffer from any of the complications of prematurity. There are also significant risks to the mother, including damage to her uterus that could make it impossible for her to have more children. I believe even with the positive results from the study, the fetal surgery will not be the right choice for everyone.

I am forever grateful to our friends and family that helped us, allowing me to make the relocation to San Francisco, by helping with the care of my other children or even making the long flight there to stay with me as my support person.

I am grateful for the positive outcome of this trial, not just for Ruth, but for all future babies born with spina bifida. My hope is that they will continue research to help those living with spina bifida.