Replies

Becky - Thanks!!

22
My son likewise has Spina Bifida. When we went in for a routine ultrasound, we were so excited to find out whether God was giving us a son or daughter.
After we learned we had a son, the radiologist came in with what we thought to be the most devastating news. He had Spina Bifida, Arnold Chiari Type 2 Malformation and Hydrocephalus. The radiologist actually made it sound as if the baby (Adam) would be in pain, in danger of dying at birth, and have a miserable life. None of which was true, mind you. He pretty much seemed to be selling us an "abort" position.
Since we love God and babies, that was not an option.

We immediately got online to learn what these problems were and the seriousness of them. In a week stumbled upon the Children's Hospital of Philadelphia website. After reading about In Utero surgery elsewhere, what we read from CHOP was very encouraging so we gave them a call.
We were given a plane ticket to see if Adam and Suzie (my wife) were candidates for this surgery. They were!!

The risks were well explained. 6% of the patients(babies, not moms) had died from pre-mature labor and the results are by no means guaranteed. We were unsure at first because a live baby with bad symptoms is better than no baby at all! But I believe God gave us a peace to proceed and the confidence it would work out.
My personal belief about faith in God is that if a decision is to be made, and you believe in His Son and His ability, that your decisions will be guided by His will. I believe this about Adam.

We proceeded and on February 1st and had the surgery.
The procedure went well. Adam had a large L5 lesion The repair went well but Suzie had complications. Her placenta was beginning to separate from the uterine wall. Immediately I was worried as to whether we had made the right decision. Suzie was let out to the Ronald McDonald House after 5 days in the hospital. Since we live in California and the hospital is in Philadelphia, I had to fly home at that time. Unfortunately 2 days later Suzie was readmitted for contractions. She was again there for 5 days and again released. It was then, on February 13th that I got the call.

Suzie was in labor, full labor.
She was taken to the hospital. All I could do was worry and try to lock on time off from work, an immediate plane ticket and pack what I could to get there by evening. The doctor I called said there was no way around her delivering that morning. After in-utero surgery, they could not risk her having to push and injure herself. They would give her a caesarian.

I was able to call an hour later and in tears, I asked if I still had a son. He said an emphatic "yes!"
Nothing better than a doc giving an encouraging, upbeat answer like that to give hope.
Adam was 26 weeks and 6 days. He rejected his breathing tube and was put on CPAP!! He had full motion of his legs, feet and toes. He had good bowel functions and low hydrocephalus.

I have a web page with his updates. Basically his only real complication was he had low platelets counts for about 1 1/2 weeks. He is now 7 1/2 weeks old (34 1/2 gestation) and he takes full feeds from a bottle, is awake and alert, still has no Spina Bifida symptoms and has never been sick to date (Grace of God!)

He truly is a surprise to the CHOP NICU and his doctors.

He is not to me though. He is my little miracle who will be joining me at home here in California in about 1-2 weeks.

God really is in control I understand Adam has been an extraordinary case, but God is the ONLY one we can trust to be the keeper of both Adam, and your grandson. God is faithful!

Rom 8:28 We know that in everything God works for good with those who love him, who are called according to his purpose.

Believe it, no matter what happens. I will definitely pray for you. You have just stumbled on the best prayer team in FR (The Neverending!)

Thanks I am printing your reply out for my daughter. I am glad everything worked out for your son and wife in the end.

My family did not know my grandson had this and had their third homebirth. He seemed to have no damage from the birth itself as he was moving his legs, etc. Full term, alert, a strong nurser and weighing nine pounds. They saw the problem and put sterile gauze over it, and ASAP went to the children's hospital.

The cord was short and the placenta probably separated somewhat early but the labor was short (<5 hours). The placenta also had several small pieces separated. (I did clean up and watched for any signs of retention.)

Then of course when the doctors do the operation for closure there is nerve damage. He needed a shunt, too, although his hydrocephalus was very minimal and was only found with ultrasound... of course untreated, it would increase.

He is now waking up more and nursing well there is no infection. The plastic surgeons are cooing over his progress in healing. God willing it will continue to improve daily.

Interesting that his platelets are on the low side, too.

A chiropractor came by today and massaged his legs, he responded by wiggling toes on both feet!

His left foot has a metatarsal bend which may respond to therapy but may require surgery.

We will find out in a few days about urinary and elimination systems.

Now going to take care of the 2 and 5 year old siblings.

God Bless--