Spina Bifida Awareness: A Story of Joseph

Today we get to hear from Brian, father to Joseph, as he recounts the diagnosis and birth of his son!

I would like to share my story about my son and the challenges we faced when he was diagnosed with spina bifida. My wife was 21 weeks pregnant with our 5^th child when she went to her usual O.B. check up for an ultrasound. Everything was going smoothly with the pregnancy so far. I tell you, nothing would have prepared us for what we were about to hear. I was at home with our other children while she went to the appointment. They told my wife that our baby had hydrocephalus, which is fluid on the brain. My wife called me to tell me the news. They had no answers for us and referred us to a specialist to go to the next day.

 We were devastated! We didn’t know what to do and felt so hopeless and powerless. We definitely didn’t feel ready for what we were about to face. But the LORD knew what we could handle and I was reminded that He is faithful to His children for whom He loves so dearly. We did what the Bible instructs us to do, which is to take our problems, worries and concerns to God. So my wife and I prayed together. Then we went to our Church and prayed with everyone that was here that day. We felt so much love and support. I’m so grateful for all the wonderful brothers and sisters the LORD has surrounded us with at our Church.

 Well the next day came and we went to the specialist. He told us that our baby had a birth defect called Spina Bifida. We didn’t know anything about this condition. We were told that his spine was protruding out of his skin and was exposed. As usual Doctors give the worst news first and maybe some optimistic possibilities at the end. The Doc gave us a whole lot of bad news that day. He said there would be nerve damage that could cause partial paralysis or complete paralysis of his legs. He said he might need assistance with braces, crutches or a wheelchair. He also said he might have difficulty learning, urinary and bowel problems. We were also told he might have hydrocephalus, which he already had and the possibility of needing a shunt in his head for the rest of his life. He told us that as soon as he was born that he would have to go into major surgery to have his back repaired. We were petrified to say the least when we left that day. 

My wife and I retreated to prayer and then went to the church to let everyone know the news we had just heard and for more prayer. We were so loved and encouraged by everyone and we love them for that and will forever be grateful. We also realize that there were people there praying for our son Joseph that we hadn’t even met yet.

We did our research and tried to prepare ourselves  for whatever the LORD had in mind for us. There is one thing I would like to bring up that the LORD has opened my eyes too during this experience. After he delivered all this bad news to us we were asked by the specialist if we wanted to abort our unborn child. I was never really personally confronted with this question before. I was deeply disturbed by this question and was offended at first, but later learned that it is state law to ask the mother if she wants to abort the pregnancy when a birth defect is diagnosed. Now I have a burden on my heart to help change this about our state and our nation. I look at my son today and think about not knowing him and him not having the chance to live and it breaks my heart knowing that so many babies are robbed of this chance due to misinformation and fear. We learned from doing the research that spina bifida is a very livable birth defect and there is lots of help and support out there.

We didn’t know what name we were going to give our son until I had a dream. The LORD had put it on my heart to name our baby Joseph (Son of Jacob) and the following day the name Zechariah was revealed to me from a friend. Joseph means “God will increase” and Zechariah means “God remembers”. This gave me hope that the LORD was in control and that everything was going to be ok.

 

The birth of our baby was an amazing time even though it should have been by the world’s standards one the worst times. We prayed for God to surround us with Christian staff while in the Hospital. When my wife was being prepped for surgery, her pre-op nurse read my Jesus button T-shirt and said she was a believer as well. We shared some of our story of everything that was happening and she was very encouraged. She began to point out all of the nurses that were Christians on the unit and all of them were, accept for one. She asked us to hold on, and left for a moment. She came back with a piece of paper and gave it to us. She said it was the verse of the day from her desk calendar and said we could have it and that maybe it could be read at Joseph’s dedication. The paper read “You have made known to me the path of life; you will fill me with joy in your presence, with eternal pleasures at your right hand. Psalm 16:11” My wife and I were in amazement. We knew Jesus was right there with us and that He heard all of the prayers from everyone.

 When the Doctor delivered our son he shouted and held him in the air. He kept shouting “LOOK, his legs are moving, his legs are moving”. This was incredible news! We have an awesome God! Now we were about to face one of the most difficult challenges we’ve ever faced. Our newborn son was about to have major surgery to repair his spine. We were told that there was a good chance that our baby would come out of the surgery paralyzed. The LORD saw us through this time of despair. He was in surgery for 5 hours and it was a success and was not paralyzed. The plastic surgeon said the scar would be a swirl but after the surgery he said he was forced to close it a different way resulting in the form of a plus sign and I said a cross.

Today our son is healthy and developing remarkably well despite his condition. My testimony has been that the natural was taking its course with our son leading up to the diagnosis but when the LORD heard all of the prayers and petitions, He had to do something and that’s when the supernatural took over and miracles began to occur. We are so blessed to have such a wonderful healthy child and though it seemed like we were against all odds we now have stronger faith and a deeper relationship with God from this experience. It seemed like a tragedy and the LORD has turned it into an opportunity to glorify Him and help others. Thank you for taking the time to read this story and I hope your days are filled with the joy of the LORD.

Thank you so much Brian for sharing your journey with us!

If you would like to read more about this wonderful family, check them out HERE!