Monday, February 14, 2011

Why did I choose to have fetal surgery?

I've been listening to the SB community buzz out there, and it seems there is a lot of mixed feelings about the results of the MOM study (Management of Myelomeningocele Study). From some comments I've read, I almost feel indirectly attacked for participating ("How could anybody risk their baby's life like that?"). I believe both those that chose the fetal surgery, and those that did not, did the right thing for their child and their family. It is a personal decision, and here is our personal reason.

So, why did we pursue the fetal surgery after we found out about Ruth's diagnosis?

The experts we met with locally (a perinatologist and a pediatric neurologist) both felt strongly that the fetal surgery could help with the hydrocephalus aspect of spina bifida. They both impressed on us how that one thing could make her life easier. A shunt is a life saving device that helps drain away that fluid. It does save lives, everyday. But we hoped that was one surgery she wouldn't need.

The experts we met with at UCSF during our evaluation at the trial, all seemed very enthusiastic about the surgery and it's potentials. We were naturally concerned about the risks. The statistics given to us about the surgeries done before the trial started were SCARY. I could see, based on those, someone would walk away. But those weren't what they were seeing at UCSF. They told us they had NEVER lost a baby nor a mother to this surgery. They were good at what they did, the surgeons there were the best in the world. I felt confident we were in good hands.

We also prayed. We prayed A LOT. Our family prayed, our friends prayed. We knew if the doors opened for us to have this surgery, it was His will. Because of the trial aspect, and the randomization, there was low odds of getting to have the fetal surgery. If we were given the chance, we felt it was the right path.

I remember the day of the surgery, saying goodbye to Matt and getting wheeled into the operating room. I felt total peace. I was not scared at all, I knew everything would be fine. And it was. The surgery was called "textbook".

Ruth was a super star during her first appearance in this world. Even the rest of the pregnancy was somewhat "normal", that is until I went into labor at 31 weeks.

I do feel guilt about her prematurity. That is something that likely would not have happened had she not had the fetal surgery. But she handled that like the superstar she is. She required no help breathing after the first few moments of her life (she was on c-pap briefly). The main thing that kept us in the hospital was her learning to eat (a preemie thing, they don't know how to suck until about 34-35 weeks), and then right before discharge, she had a UTI that required a couple days of antibiotics. I do feel fortunate she did so well, and continues to do so well.

She does not have a shunt, but she may still need a shunt. She may not walk without braces, but it looks promising as she has great movement and strength in her legs. She already has issues with her bladder and kidneys, and requires medication and cathing. Is she better off because of the fetal surgery? I believe so. But that's one thing you can never know FOR SURE, because how can you know?

I have no regrets. I believe we did the right thing for her, and regardless of the study results I do believe she benefited. I also participated for the sake of future children. So they would have the best treatment available, and not have to wonder like we did.

For those interested, the numbers comparing the two sides of the study (prenatal and postnatal) were the most telling to me. The kids on the prenatal side had a higher number of L1-L2 lesions than the postnatal side, but had better results on the areas they looked at.

What about bladder and bowel issues? Those aren't addressed yet, because of the young ages of the kids. Many kids without spina bifida aren't potty trained at 30 months. I believe that is one thing they will look at when they follow the kids at older ages. I am interested to hear the results of those as well.

One thing a friend wrote in her blog hit home, maybe now that fetal surgery is shown to help, some OB's will stop pushing termination. Maybe, in that way, it will save a baby's life.

My hope now is, with all the positive results here and media attention, more research will begin and continue to help those already living with spina bifida.

The study numbers:

Friday, February 11, 2011

Snow Baby!

Last week, North Texas was almost completely shut down by a winter storm. My girls had almost the whole week off of school! On Friday, we had a fresh snow and the wind finally died down some, so I took advantage to take Ruth out to get her first experience with snow. She wasn't all that impressed. Too bright, and too cold!

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.

Wednesday, February 9, 2011