Guest Post: Jax's Story

Life has a way of leading you back exactly where you need to be.  It also has a way of reconnecting you with people from your past exactly when needed most.  In late October last year when I was still early on in the pregnancy with Will this happened to me.  I was contacted by a fellow mom I used to go to high school with.


Lindsay emailed me to say that she was lifting our family up in prayer because of all the potential miscarriage / bleeding issues we were having.  At the time she emailed me, she was expecting her third child.  Things were progressing well, but life was about to throw her family a curveball, too, and we would soon find ourselves on different, yet oddly terrifying, pregnancy journeys.  Here's her story of facing the unknown and keeping the faith.

Lindsay and Jax on January 7, 2012

Jax was born January 7, 2012, a month ahead of schedule, weighing a whopping 8lbs, 5oz and 19 inches long.  Jax’s story began long before his birthday and long before we knew there was a problem.  In May of 2011, we learned we would be adding our third child to our family and would become the Jackson 5!  I attended all of the routine prenatal appointments and everything seemed to be going right on track.  We learned in September our new addition would be a boy!  We were thrilled!  We left our 20 week ultrasound appointment thinking that our son was growing and developing right on track so we continued our preparations for his arrival into our home, our lives, and our hearts.

Eight weeks later I went for the usual gestational diabetes test.  I arrived alone for this appointment, after all this was our third pregnancy and everything was going well.  Or so we thought.  I walked into that appointment blind to what was about to crush our world.  At this appointment, we would learn that there was a major complication with our son’s development and health.   Jax was suspected to have LUTO (lower urinary tract obstruction).  His kidneys were dilated, his bladder distended, and my amniotic fluid was dangerously low.  We were transferred to a regional hospital where I was monitored for 3 days before being sent to the Children’s Hospital of Philadelphia (CHOP) for possible surgery to help our precious son.

After arriving at CHOP and going through extensive ultrasounds and testing we were smacked in the face with the possibility that sweet Jax probably would not survive after his birth.  We were unofficially diagnosed with post urethral valves which couldn’t officially be diagnosed until his birth.  PUV is a valve that stops the flow of urine from exiting the urethra.  Here’s a quick biology lesson.  The last 2/3 of a pregnancy the amniotic fluid is made up of babies pee.  That’s right, I said pee!  Babies ingest the amniotic fluid, it passes through their bodies and then exits as pee, replenishing the amniotic fluid that creates a wonderful cushion and perfect world for baby to properly grow and develop.  Jax had ingested ALL of my fluid and it was trapped within his bladder, ureters, and kidneys.

Amniotic fluid also plays an important part in lung development.  When baby ingests the amniotic fluid some enters the lungs and helps to expand them and grow necessary tissue for survival on the “outside”.  This was the major concern for baby Jax.  Would he have enough lung tissue to survive in the outside world?  Would he be able to breathe on his own?  The doctors at CHOP were not hopeful that he would be able to do these things when he was born . There was a good chance that he would die before his birth and arrive as still born.  The cushion of amniotic fluid was completely gone and he could easily shift and compress his cord cutting off his only lifeline.  They were unable to do the surgery to place a shunt to relieve the urine from his bladder back into the placenta.  So we were discharged and sent home to carry him as long as I could, give birth, and more than likely bury him.  We were told not to expect him to cry.  We were told to expect him to be deformed.  We were told that if he did live he would have severe damage to his urinary tract, specifically his kidneys.   We were devastated.

When we arrived back home in rural Southwest Virginia, we had no referral to a facility, no name of a qualified doctor, no hope or help for our son.  I refused to have my son locally as no hospital would be equipped to deal with his problems in the event that he would live.  I wanted to give him every chance of survival that I could so I began looking for pediatric urologists.  My search led me to the University of Virginia.  I contacted a doctor in the pediatric urology clinic via email and had a response from him, as well as a response from a doctor in Maternal Fetal Medicine within 30 minutes of sending the initial email.  They would take our case and we had appointments with both at the end of November 2011.  

In the meantime, we began to pray. And to pray.  And to pray some more.  Then we asked our family and friends to pray.  Pretty soon our story spread and many churches in our community and in neighboring communities were praying for Jax and for us.  We began praying every evening at 7 and would stop what we were doing wherever we were doing it to pray.  We prayed in restaurants, we prayed in stores, we prayed at basketball games.  We asked others to pray with us every evening at 7 too and they did.  They prayed in malls, at social groups, and with their church bible studies.  Knowing that so many people were praying for us brought great comfort to us knowing that God was with us and so many people were being obedient to Him.

January 7, 2012, Marion Dyer Jackson, IV, also known as baby Jax, was born by emergency C-section at UVA medical center.  At 6:47pm Jax entered this world, inhaled and took his first breath and cried!  What joyful noise!  My husband, Dyer and I looked shocked at each other and simultaneously uttered the words “He cried! He cried!”  Jax was alive!  He was breathing on his own!  He was the most beautiful, perfect little baby!

Jax would go on to spend 37 days in the NICU at UVA where he would suffer with a pneumothorax, a hole in his lung, which would require him to be on a ventilator for 7 days.  He would also suffer from metabolic acidosis, stage V kidney disease, and grade IV vesicoureteral reflux (a backflow of urine from the bladder into both kidneys).  He would have surgery to fix his valves and would suffer with one nasty UTI that would sequester him into isolation.  He would be deemed as “failure to thrive” and lots of talk about dialysis and feeding tubes.  

Jax is now home and doing wonderful!  He has almost doubled his weight and grown 6 inches without the help of a feeding tube.   His kidneys are working at approximately 29% and he will eventually need dialysis and a kidney transplant.  We go to the renal clinic at UVA frequently for checkups and lab work.  He is currently doing fantastic on his medications that control things that his damaged kidneys cannot.  Our journey wth Jax has taught us so much in such a medium amount of time.  Live for the moment and love every second God gives us.  Trust in the Lord for all things he does is for the good.  Love each other and find solace in God. This experience has brought us closer together as a family.  It has brought us closer as a husband and wife.  It has brought us closer to God.  So much good has come from this nasty situation.  We don’t know what the future holds for him, but we do know  we have been truly blessed with our little miracle baby and we look forward to our future with him and our other children.  God is good, all the time!

I am so blessed by Lindsay and Jax's story.  I vividly remember the day Jax was born.  I stalked Facebook constantly for updates and prayed so much for their family.  In some ways, Lindsay was my mentor for my own pregnancy journey.  I saw their little miracle and it gave me more hope that Will's story could turn out the same way.  If you want to read more about their family and follow Jax's amazing story, please visit their website.