Devastating News
It was 2004. My first pregnancy. We went from sweet anticipation to utter devastation the morning of our first ultrasound.
On the scan they found our son had MULTIPLE DEFORMITIES. He had an opening in the back of his skull where his brain was protruding. This was further complicated with marked hydrocephalus and 2 (instead of 3) umbilical vessels.
"INCOMPATIBLE WITH LIFE" is what we were initially told. Later genetics informed us that he had less than a 50% chance of surviving to birth. After birth the survival rate was dismal. The specialists said that our son would have "no quality of life" and would be like a "vegetable". We were advised, "It would be merciful to terminate the pregnancy." Â They made us feel as if we were bad parents to let him live.Â
We were heartbroken. For a week I walked around in a daze...weeping. Â I remember searching the internet trying to find information on the diagnosis (Large Occipital Encephalocele) with very little result. One child I found had survived but with extremely limited function. All the other babies had been aborted or died shortly after birth. Every report we read or heard from the doctors spoke of death or severe disability..."bed ridden, wheelchair bound, blind, mentally retarded"...Â
I felt his tiny kicks inside of me. How could I take his life when I could feel each of his movements?
Choosing Life
One verse had a huge impact on our decision whether to keep or abort our baby.
"For you created my inmost being; you knit me together in my mother’s womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. My frame was not hidden from you when I was made in the secret place, when I was woven together in the depths of the earth. Your eyes saw my unformed body; all the days ordained for me were written in your book before one of them came to be." -Psalm 139:13-18
How could I play God and cut short whatever days God in His infinite wisdom had predestined for my son...even if that meant he lived only a few hours. Even if the cost was a lifetime of caring for our disabled child.These verses gave me such peace knowing that God was in control. He saw his unformed body. God already had every day planned out for my son before even one of them came to be. We chose to let our Lord decide the number of Nathan's days here with us.Â
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Preterm Labor
I went into preterm labor at 23 weeks. Again we were faced with the decision to choose life or death. The doctors told us that my body was going through the natural process to get rid of the fetus. We cried out to God for direction. Once more we were lead to choose LIFE.
I was given pills to stop the labor and went on bed-rest for the next 4 months. This turned out to be a mercy in disguise. As a Labor and Delivery nurse, I found the job was becoming more difficult emotionally.
Hands and Feet of GodOur church family gathered around us, brought meals, and cleaned our home. Once a week we went to a small gathering at a church we didn't even attend. There we were lovingly ministered to and prayed over for our son's healing. We were blessed to have several people walk closely along side of us who spoke God's encouragement and hope. All over the world people were praying.
Deepness
Through that time period on my back....waiting.... my faith and intimacy with Jesus grew unlike anything I had experienced previously. The Scripture came alive to me as I read it. I journaled notebooks full of verses and promises that God gave me to cling to. And I cried out. I poured out everything. My dreams. My fears. My sorrow. My loss. My grief. My pain.
God met me in my pain. He met me in my questions. He showed Himself to me.
He carried me through.
Encounters with Jesus
During that time period I had several life-changing encounters with Jesus.Â
At a point of utter desperation in prayer one night, Jesus appeared to me in the flesh. He spoke to me and held my hand.
Another time while in prayer at the little chapel a vision opened up to me and a voice spoke to me saying, "Because you have the blood of the Lamb on your doorpost, the angel of death will pass over your home."
In a sweet dream the Lord gave me I saw my future son. He was wearing blue footie pajamas and standing up in a crib with his arms stretched out to me.
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Ultrasounds and More Bad News
We had a consultation with Neurosurgery who would remove the encephalocele if Nathan survived to birth. They were concerned that pressure from the hydrocephalus was preventing his brain from forming.
Every 3-4 weeks we had repeated ultrasounds. Each ultrasound showed his encephalocele measuring larger. What's more, the ultrasounds showed his brain grow increasingly outside of his head. At one point the technician showed me his left and right ventricles, which were supposed to be on either side of the middle of his brain. They had grown outside of his skull.
At this point the High Risk doctor said, "It is out of our hands." There was nothing they could do. I asked the doctor, "What exactly does that mean." Her answer was that our son would not survive.
Going Against Medical Advice
Neonatal Pediatricians advised us to have a natural delivery saying that a c-section would make no difference in the outcome. A c-section could increase risk for a future healthy pregnancy. As we sought God's will, we didn't have peace about a natural birth.
Again our choices went against what the medical team was advising. We wanted to give our son the best chance at life and didn't want to look back with regret. The pediatricians shook their heads at us...not understanding our decisions.
We signed a DNR. We didn't want heroics done...no intubation or ventilator. After regular attempts to help him to breathe on his own....if he didn't...we just wanted to hold him. My greatest wish and prayer was that I would be able to nurse him at least once before he passed.
When the Shower Feels Like a Funeral
I bought one little outfit for Nathan. Whether it would be worn for his burial or home coming...I didn't know.
When I was close to full term, my Labor and Delivery co-workers threw a surprise "shower" for me in one of the hospital rooms. Banners lined the walls of the room on which they had written Scriptures of comfort. Light refreshments were served. Cards full of love, support, and verses were slipped into my hands. There were no baby gifts. No games. Of anyone, these nurses, doctors, and techs knew how serious my baby's condition was.
Everyone had pitched in on a single gift. It
was a beautiful mahogany memory box. The kind our unit gave to mothers who had lost their babies. Inside we would place footprints, photos, a lock of hair...mementos. Beautifully inscribed on the box plaque was my son's name "Nathan Valentine". It was a thoughtful touching gift. I couldn't help but feel that I had been handed my son's casket.
Unexpected Labor
A week before my scheduled c-section I went into labor. After 4 months of bed rest, I had made it full term to the day. The exact doctor and nurses I had wanted for my delivery all "happened" to be on duty. My dear midwife, Jan, rushed from the clinic to sit by my side and held my hand during the c-section.
I cannot describe the peace that carried me through surgery and the unfolding days ahead. It was truly God's grace and the prayers of many. Later we heard stories of people being prompted by God to pray for us as Nathan was born.
Birth
Nathan came out screaming and kicking.  He was full of life. His apgars were 7 & 9 (like a healthy baby). Ironically he peed on the pediatrician who had told us there was no point in the c-section. Â
On the back of his head was a sack (encephalocele) about the size of a grapefruit. His nose was crooked from his position in my pelvis. I am very thankful that we had a c-section because I doubt I could have delivered him due to his presentation without severe trauma to both of us. The Lord had clearly guided us in each decision as we sought Him.
After birth I was able to hold and nurse him. What an answer to prayer. It was a precious time.
He was acting like a normal baby.
Surgery
After spending several hours with him, he was transferred to Children's Hospital. It about ripped my heart out to be separated from him. The following day his Neurosurgeon said that she had been up late the night before trying to figure out how she was going to fit some of his brain back into his head. This is where our story becomes even more miraculous.
The neurosurgeon told us that the MRI of his brain revealed that there was NO BRAIN matter in the sack, just fluid, and there was no hydrocephalus. All of his brain was formed and in his head. What a reversal! Neurosurgery said that it would be a fairly routine procedure and that he should be coming home with us within a week. Which he did!To God be all the glory!
The Next 14 Years
Bumps Along the Road
A week after Nathan came home he developed hydrocephalus. His brain fluid had ended up being shunted into the sack which allowed his brain to form without added pressure. After the sack was removed the pressure began building up again and a shunt was placed. He has had 5 shunt revisions since surgery when the tube has become blocked.
Nathan developed epilepsy which has been well controlled with medication. By the grace of God, he has been seizure free for 7 years. He has in some areas blossomed at a slower rate than other kids, but has remained on the low/normal curve.Â
Education
Nathan is currently in 8th grade. He has an IEP with accommodations such as extra time taking tests because he has a slower processing speed. He struggles with some math concepts. Over the years he has received periodic OT, PT, and Speech Therapy.
IQ
On a recent IQ test, the neuropsychologist found Nathan's general ability index to be AVERAGE. He is projected to be able to graduate high school and carry a job. We don't put much weight on "professional's" prognoses because Nathan always seems to surpass and confound their predictions. We know our God is able to exceed our expectations and do abundantly beyond all we ask.
Loving Life
Nathan has an affinity for music and plays the piano by ear. He can often be heard composing his own songs. (another song).
He currently practices Kung-Fu and plays Flag Football on a Unified Sports team. In the summer he trains with a local swim team. Independently he rides his bike several miles each way to and from school.
Nathan is a phenomenal big brother to his 4 younger siblings. By God's grace all of them were born naturally and are healthy.
Nathan is a miracle! He is a true "gift from God."
~by Deborah Valentine