Our attempts to qualify for the fetal surgery came to an end early this morning. Rachel, the amazingly friendly and tenderhearted nurse at UCSF spoke to McKenzie for nearly an hour today. Ultimately it was decided that McKenzie and our little girl would not be good candidates for the fetal surgery. Rachel comforted us by explaining their decision perfectly.
She said: Most children with SB who do well...do well because of their parents. She complimented us by saying that she thought our little girl would thrive...not because of the timing of surgery...but because of the care she would receive from loving parents throughout her life. Tears fell freely from our faces as we both listened to her explanation...trying desperately to believe the compliments and reassurance she was giving. She stated that the fetal surgery has only been shown to benefit an estimated 30% of those babies who receive it. The other 70% show no benefit or worse. She ultimately stated that gambling to be one of the 30% with the risk of prematurity would not be a wise endeavor. "Imagine" she said "your baby has SB, a fetal surgery is performed, only to cause your wife to deliver at 25 or 26 weeks. Now you have a child with an open wound from surgery, SB, and all the horrible complications of prematurity, including potentially lifelong issues with lung function, neurological function, etc...it's just not worth it." We told her that we were going to strive toward the goal of fetal surgery until every avenue was exhausted...until everyone said no...and that's what we did. Rachel said that they wanted so very much to make an exception in our case...but ultimately could not come to feel comfortable with it. Who are we to argue with the best physicians in the world. If they feel that the procedure was likely to hurt our baby more that help her...then who are we to push further. We only want what is best for her...and what is best for her now is to wait until she is born...have the procedure...and nurse her to health and strength throughout the rest of her life.
It is strange how things happen. We can't help but feel the divine hand of a loving Father in Heaven in all of this. Wyatt too early but was fine in every way...and 5 years later...that fact would be the determining factor in a decision nobody alive should ever have to make...and nobody had to. It was made for us. This knowledge alone gives us peace and hope for the future. We can now look our little angel in the eyes and tell her, "we did all we could have before you were born...and we will do all that we can now and forever...to give you the life you deserve."
A BIG thank you to all our friends as UCSF for their honesty and integrity. God bless you all.
I don't know your family, but I came upon your blog through Very Jane. I felt I needed to write to you. My husband and I went through the exact same experience you and your wife are going through. 14 years ago I had a son who was born with Spina Bifida. We too looked into fetal surgery, but back then only a few had been performed. Through much prayer and fasting we decided to not go through with the surgery. My son has gone through a lot of surgeries since his birth, but I have always felt like we made the right decision. He is a special boy and brings a calmness to our home. The Spina Bifida clinic at Primary Children's Hospital has been great. There are also support groups who have been wonderful. Heavenly Father is sending you a precious gift. Stay positive, things will work out. I wish you much happiness.
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