Nathan's Story: Occipital Encephalocele

Nathan-A Gift From God

Searching For Hope

For those seeking answers, I understand the feeling of devastation after being told the heartbreaking news that my unborn son had a major brain defect: a Large Occipital Encephalocele. For days I walked around in a daze weeping.  I remember searching the internet trying to find information on the diagnosis with very little result. Only one I found had survived but with limited function. All the others had either been aborted or had died shortly after birth. Every report we read or heard from the doctors spoke of death or severe disability. 

The reason I created this blog is to tell precious families who are searching that there is HOPE! 

Our story cannot be told unless we include Jesus. He performed a miracle in our son, Nathan, who is now an amazing, sweet, smart 9-year-old boy. 

Our Story

It was 2004, my first pregnancy, and I was 19 weeks pregnant when we had the first ultrasound. We went from such anticipation and elation to devastation that morning. We were told that our son had a large occipital encephalocele, marked hydrocephalus, and a two vessel umbilical cord. At first we were told that his condition was incompatible with life. Later that day we were sent to genetics. They told us that he had less than 50% chance of surviving to birth and after birth the survival rate became dismal. The specialists said that our son would have no quality of life and would be like a vegetable. We were told that it would be merciful to "terminate the pregnancy".  They made it seem as if we would be bad parents if we let him live. 
Because both my husband and I are Christians, we chose to not have an abortion and let the Lord decide the number of Nathan's days. I remember feeling him kick so strongly inside me and thinking how could I take his life when I could feel his movements. Every move was cherished because I didn't know if I would ever see or hold him alive. One of the verses that had a huge impact on our decision to not abort our son was Psalm 139:13-18.

"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." 

These verses gave me such peace knowing that God knew what was going on with my son.  He saw his unformed body, and God already had every day planned out for my son before even one of them came to be.  How could I play God and cut short whatever days God in His infinite wisdom had predestined for my son...even if that meant only a few hours of life after birth or a lifetime of caring for my son.  

Pregnancy

I went into pre-term labor at 23 weeks and was placed on modified bedrest for the next 4 months. This turned out to be a mercy from God as I was a Labor and Delivery nurse at the time and was finding the job increasingly difficult emotionally. Once a week we went to a little church gathering where they prayed for our son's healing. Our church family gathered around us and brought meals and cleaned our home.

36 Weeks Pregnant

Those four months of carrying my son after finding out about his "defects" grew my faith and intimacy with Jesus unlike any other time in my life. I had several life-changing encounters with Jesus during that time.  (One of those encounters: The night Jesus held my hand.) The Scripture came alive to me as I read it, and the Lord truly carried us through those months.   I know and can not deny that there is a God from all the ways that He revealed Himself to me during that very difficult time period. I pray that Jesus will make Himself known to you in your time of deepest need as you seek Him.

Ultrasounds and Doctors

We had a consultation with Neurosurgery at Children's Hospital Detroit where Nathan would have surgery to remove the encephalocele if he survived the pregnancy and birth. They were concerned that the pressure from the hydrocephalus would prevent his brain from forming. Through the pregnancy we had repeated ultrasounds every 3-4 weeks. Each ultrasound showed his encephalocele getting bigger and bigger. Also, the ultrasounds showed more and more of his brain

In the OR before C-Section

growing outside of his head. At one point the technician showed me the left and right ventricles, which were supposed to be on the sides of the middle of his brain, had actually grown outside of his head into the sac. At this point the doctor told us it was out of their hands and there was nothing they could do.  

Delivery

We decided to do a c-section because we wanted to give our son the best chance at life. Again we were told by the pediatricians that this would make no difference in the outcome. We didn't want to live with regrets.  I bought one outfit for Nathan. I didn't know whether we would take him home in it or bury him in it. All over the world people were praying for Nathan. At exactly 37 weeks I went into labor. The Lord orchestrated that the exact doctor and nurses I wanted at the delivery were there. My dear midwife, Jan, came down from the clinic to hold my hand during the c-section. We chose before hand that no heroics be done after delivery (ie being intubated and put on a ventilator). Due to so many praying and God's grace, I was carried in perfect peace throughout surgery and after. Nathan came out screaming and kicking.  Ironically he peed on the pediatrician who had told us there was no point in the c-section.  His apgars were 7 & 9 (like a healthy baby).  After birth I was able to hold and nurse him, an answer to prayer. It was a precious time. The pediatricians told me that he was acting like a normal baby- something they clearly didn't expect.

He had a sack on the back of his head about the size of a grapefruit which they wrapped in

gauze. His nose was crooked from how he was laying 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 even when it went against medical advice.

Holding Nathan for the first time!

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. To God be all the glory! 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! The Neurosurgeon told us that it would be a fairly routine procedure and that he should be coming home with us within a week. Which he did!

After Surgery to Remove Encephalocele

After Surgery

Daddy gets some snuggles

My first time holding Nathan after surgery.

The Next 8 Years

Nathan at 6 months

There have been a few bumps along the road. The brain fluid had ended up being shunted into the sack which allowed his brain to form without the added pressure. After the sack was removed the pressure began building up again.  Nathan developed hydrocephalus about a week later and a shunt was placed.

He developed seizures at 4 months which are well controlled with medication.  He had 2 shunt revisions at 4 months and one at 9 months, but hasn't had any problems since.  His last seizure was 2 years ago.  He has in some areas blossomed at a slower rate than other kids, but has remained on the low/normal curve.  He walked at 17 months.  He occasionally received OT and PT for mild low muscle tone. We patched his right eye for a number of years due to it "turning in". This has since resolved.

He receives language therapy through the public school system. He has an IEP with his school with some accommodations such as extra time taking tests because his brain processes information at a slower pace than some others.

Nathan age 4

We had his IQ taken in Kindergarten by a neuropsychologist. It averaged at 80.  He is projected to be able to graduate high school and carry a job.  We don't put much weight on the "professional's" prognoses because Nathan always seems to surpass and confound their predictions. We know our God is capable of doing the impossible.

  

Nathan with his little sister

Nathan is now in 3rd grade and keeping up with his peers. He is a normal kid! He plays soccer, loves bugs, wants to be a scientist, and is gifted on the piano. He is a phenomenal big brother to his 4 younger siblings who God granted me to have naturally. All of them are healthy. Nathan is a true "gift from God" which is what his name means. 

Nathan (on the left age 8)

Please feel free to contact me further. I would be happy to talk with you. You can email me at debbievalentine03@yahoo.com. I cannot promise you the same outcome for your precious child, but I can say that with God all things are possible. He has a plan for you to give you a good future, abundant life and living hope. He loves your unborn child and has a specific and good plan for your little one. (Jeremiah 29:11)

"Before I formed you in the womb I knew you, before you were born I set you apart; " -Jeremiah 1:5