In April 2018, after trying for 6 years to conceive a second child, we were surprised (to say the least) to find out that we were expecting. From the very first doctor appointment we were informed that everything was great. At 13 weeks the doctor recommended lab work, due to my advanced maternal age, as well as making an appointment with a high risk specialist. The results came back that we were expecting a perfectly healthy baby boy…Jaxon. At our 18 week appointment the sonogram continued to show a perfectly healthy baby boy.
The doctor stated that it was not necessary for us to see the high risk specialist unless we wanted to, but that it was not necessary. At that point, my husband and I went back and forth whether or not we really felt like we needed to since everything up to this point looked great. After talking, we decided that we should go to make sure that everything was good.
At 20 weeks we had an ultrasound at the high risk specialist. It was at that appointment that we were told that Jaxon had club feet, a small chin and possible contractions in his hands/arms. To say that we were shocked would be an understatement. It really rocked us to our core. She told us that our “healthy” boy was far from healthy and possibly would not make it to his due date, if he even made it that long. She began recommending further testing to see if it would be “worth it” to continue with the pregnancy and even recommended terminating the pregnancy. We explained to her that abortion was not an option and that we would do everything that we could to further understand what was wrong and what we could do. To us Jaxon was a miracle and we loved him no matter what. That day they ran multiple test and performed an amniocentesis.
As the pregnancy continued every test result came back negative (which is good) and every sonogram showed small but positive changes. The specialist could not tell us what was wrong. At 32 weeks I went into preterm labor. I was admitted and placed on bedrest until they decided it was the best time to deliver. On November 28th (34 weeks) I was scheduled to have a c-section. The neonatologist had an entire team of specialist ready for Jaxon due to the complexity of not knowing how he was going to react being out of the womb.
The c-section went as planned. When they pulled him out there was silence. He was not crying. He was rushed to a side room where the team was working on him. We did not know if he was alive. After what seemed like hours, one of the neonatologist came to us and informed us that not only was he alive he was breathing on his own. We were all stunned and prayed like never before. Still unsure of his diagnosis, we didn’t know what battle we were up against but we did know without a doubt we were ready to fight.
Later that night he required intubation. The next day after multiple test it was revealed the complexity of Jaxon’s health. He had every specialty visit him in an attempt to figure out the best treatment plan. We even met with a genetic specialist. She ran several tests. Some of which they had to send to special labs all across America. Test after test revealed how truly sick our poor boy was. After over a week of doctor meetings and an MRI, they were able to conclude that Jaxon had Micropolygyria along with distal arthrogryposis. Per the neurologist, Jaxon would not have a good quality of life. He would have daily uncontrollable seizures and most likely continue to require a ventilator.
We had decided prior to Jaxon being born that if God so chose to take Jaxon that we would not fight it by keeping him hooked on machines his entire life.
It was after getting these results and witnessing a steady decline in his health that we elected to transition Jaxon’s care to comfort measures. On December 12th, his 2 week birthday, he was taken off of the ventilator and shortly after he passed in our arms.
From the beginning we prayed for healing and God answered our prayers. Jaxon is healed and is no longer suffering. Through this we have learned that sometimes you have to let go of the picture of what you thought life would be like and learn to find joy in the story you’re living and that God has a purpose for everyone even Jaxon.
We would like to thank everyone for the help and prayers during this difficult time with the unexpected medical expenses.
Romans 12:12 “Be joyful in hope, patient in affliction and faithful in prayer”