By: Paulette Hughes
OAW Volunteer with Flyover Photography
Baby Jaxon’s story is one that speaks to the remarkable strength that our On Angels’ Wings families possess. His story also demonstrates the ongoing connection that OAW volunteers have with the families we serve.
After years of unsuccessful trying, fertility treatments, and clinical trials, the Miller family had resolved themselves to the fact that they were not going to get pregnant again..
Then, one day in April 2014, the family got the most unexpected and wonderful news: they were expecting! Natalie, her husband Chris and their preteen daughter Bella were over the moon with excitement. Baby Jaxon was due the following December.
It was during a routine pregnancy check-up in June that the Miller family discovered their baby’s health was in jeopardy. The technician could not find a heartbeat, and an early ultrasound was ordered. Jaxon’s heart was beating strong – but there was another problem: excess fluid on his spinal column indicated a possible chromosomal disorder.
More tests came, and Natalie and Chris were hopeful as they received the results. The chromosomal scans came back normal, and the doctors discovered that the initial fluid on Jaxon’s neck hadn’t been excess spinal fluid at all – it had only been the still-attached yolk sac.
But sadly, their reprieve was brief. During an anatomy scan, Natalie’s doctor saw evidence of a thickened nuchal (neck) fold, and ordered amniocentesis. Other tests were done. The results came back, and the Miller family received the diagnosis of Ductus Venosus Agenensis, a condition in which the umbilical vein does not go to the liver, as it is supposed to, but instead goes to the inferior vena cava of the heart. Babies with DVA typically retain fluid in their lungs, and if the fluid becomes excessive, a condition called hydrops develops. Only 10% of infants who develop hydrops survive.
But, if Natalie could carry Jaxon to at least 24 weeks, and his fluid levels remained stable, his chances of survival would be much higher. He wouldn’t need the umbilical vein after birth, so sustaining the pregnancy as long as possible became the main focus. Steroids to strengthen his lungs were given, and Natalie was also given a heart medication to keep baby Jaxon’s heart strong in utero. Jaxon was showing himself to be a brave little fighter. Natalie and Chris gave him the nickname “Ninja Warrior.”
During the time of Jaxon’s diagnosis, On Angels’ Wings became involved in the Millers’ lives.
Michelle, the founder of OAW, and Natalie had gone to the same high school. While the two of them had merely been acquaintances at that time, they had reconnected when Michelle began taking pictures for the HOPE Foundation (of which Natalie served as President from 2011-2013). They had crossed paths many times over the years, but it was the connection forged during Natalie’s pregnancy that would bond them for life. Michelle photographed the Miller family during Natalie’s second trimester – and the hopefulness and happiness in the pictures from that day is apparent.
And the Millers were becoming more and more optimistic as they started to round the corner into the “safer” zone. But one evening, Natalie started to have contractions. She went to the hospital on the recommendation of her doctor, and it was discovered that she was developing Mirror Syndrome – a condition in which the mother develops the same symptoms as her unborn child. Her condition was deteriorating quickly, so she was airlifted to Barnes Jewish Hospital in St. Louis so that she and Jaxon would have the best possible chance for survival. The prayers of countless friends and family went with them.
And On Angels’ Wings was there as well.
Michelle was tasked with assigning a photographer to be in St. Louis when Jaxon was born, as the doctors had decided that it was too risky to wait to deliver him. The prognosis wasn’t good. If they waited too much longer, both mother and baby might die. OAW is well-connected throughout Missouri, and a photographer local to greater St. Louis was soon dispatched to be by the Miller family’s side.
Natalie was wheeled into an operating room, and a team of doctors and nurses prepped Natalie for an emergency C-section. Everything happened very fast. Jaxon was born weighing 2 pounds and 1.9 ounces. The medical team immediately started working to open his airway enough to safely transport him to Children’s Hospital. Natalie did not even get to see or touch her baby boy, because she was still in surgery.
The doctors were having trouble controlling her bleeding, and her epidural had begun to wear off, so she was sedated. She didn’t remember much of what happened after that. When she came to in her hospital room, she discovered that Jaxon was gone. His oxygen levels had continued to drop after delivery, and he had passed away. Devastated at the insensitive and impersonal way the news was delivered to her, Natalie and Chris clung to each other, their faith, and the verses from Proverbs 3:5-6.
On Angels’ Wings was able to capture Natalie’s goodbye moments with her Jaxon. While she did not get to meet her little one while he was still alive, Chris did, and even in the face of such a heartbreaking loss, Natalie was somehow able to acknowledge her blessings. Her strength and grace is something that has moved everyone who knows her.
Here is what Natalie had to say about OAW’s services:
Our maternity photos captured how truly happy and excited we were to have baby Jaxon coming into our lives. When you lose your happiness it’s important to see things that remind you that you will find happiness again and remember that, though experiencing devastating tragedy, there were happy experiences/moments too, and that those were blessings. Our hospital photos, though still hard for us to look at, have forever captured the small moments I had to see my son and say goodbye to him… Even after being life-flighted to St Louis, OAW was able to be with us and take these photos. At the funeral, Michelle left and drove from her camping trip with her family to be there and capture the service. She sacrifices much for OAW. The photos from the service let us see and remember how we celebrated Jaxon, our coming together and support of family and friends and our love for one another.
OAW doesn’t stop with the photography; they are so much more. From setting up a meal train, to cards, donated gifts, and personalized ones, the love and support from OAW was probably the most significant support outside of family. They knew and gave the most appropriate things, when others just don’t know what give and do. We will forever be indebted to OAW for being there with us every step of the way and beyond.
Please continue to pray for the Miller family as they face life without their precious little Ninja Warrior, and follow their Facebook Page.
