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.
By: Kim Patterson
Like so many couples, Shelby and her husband struggled with fertility issues and endured the pain of miscarriage along the path to becoming parents. So when Shelby discovered that she was expecting, the news came as somewhat of a surprise. The parents-to-be were thrilled and even more so when they found out they were giving big brother, Wyatt, a baby sister. Araya was a name that mom Shelby had heard as a teen and had saved in the hopes of having a daughter one day.
Despite the fact that the pregnancy progressed normally, baby Araya arrived on August 28, 2013, weighing just 4 lbs 13 oz. and it was soon discovered that she had two small holes in her heart. Sadly, this was just the beginning of the heartbreaking news. At one week old Araya was diagnosed with Trisomy 18, a chromosomal disorder with a low rate of survival due to malformation of organs.
Most Trisomy 18 pregnancies end in miscarriage or stillbirth. So, despite the geneticist's cold assessment that Araya's condition made her, "incompatible with life," Araya's parents counted themselves blessed that their daughter had already made it beyond her first week and only required one heart surgery.
Araya and her family became the first recipients of an On Angels' Wings photo session. The organization got in touch with the family when baby Araya was just a week old and photographer Tora was on hand at several points along the way to capture special memories.
Shelby describes the experiences they had with On Angels' Wings and with Tora saying, "We've had several sessions with her and I cry every time I see how wonderful she captured my little girl and our family. I will forever be grateful to this organization for giving us these amazing keepsakes to remember our sweet girl by if she ever passes."
Sadly, just a month after celebrating the joy of Araya's first birthday, she passed on October 13, 2014. On Angels' Wings was honored to be able to capture precious moments of Araya and her family the day before she got her wings and also got some shots of her lovely service where family and friends gathered to say goodbye. Araya gained a special place in the hearts of the On Angels' Wings staff and her mother continues to be an advocate for our services and for Trisomy families everywhere.
By: Janis Bennett
When Lexi ran through the crisp autumn leaves in her Wonder Woman costume, complete with a blue tutu featuring sparkly silver stars, there was no doubt that this photo shoot was going to be a lot of fun. She's a beautiful little spit-fire with the heart of a warrior. Lexi is always smiling, loves to play like most toddlers, yet her eyes have a depth that makes you think she has a wise soul that has experienced more than most 3-year-olds should have to.
Michelle Cramer, OAW President, has been lucky enough to photograph Lexi since she was a newborn. She remembers a particular day, back in August of 2013, when Lexi wasn't feeling well during her 18 month photo shoot. She caught a cold and wasn't getting over it. It was hard to get a smile out of the normally chipper, bouncy little girl. Then, in November 2013, she was diagnosed with Acute Lymphoblastic Leukemia.
Leukemia is cancer that starts in the bone marrow and other blood-forming tissue. It causes large numbers of abnormal white blood cells, called leukemia cells and leukemic blast cells, to replicate rapidly and enter the bloodstream. These abnormal white blood cells crowd out normal blood cells because they don't die when they become damaged or old, which is what normal white blood cells do. The lower the number of normal white blood cells in the body, the harder it is for the body to fight infections, control bleeding, and get oxygen to tissues. Leukemia cells can spread to other organs, including the spleen, lymph nodes, and brain.
Acute Lymphoblastic Leukemia, known as ALL for short, is the most common type of cancer in children. This is what Lexi has. Acute means that it develops quickly and the cancer cells increase rapidly. Patients with acute leukemia often feel very tired, get infections, and bruise easily. Lymphoblastic means the leukemia started in the lymphoid cells. These cancerous cells usually collect in the blood and bone marrow.
Brooklynn, another little Wonder Woman and OAW recipient, also has Acute Lymphoblastic Leukemia. She was diagnosed on April 16, 2012, at the age of 3. She fought hard, and it paid off. As of June 12, 2012, Brooklynn is cancer-free! Though she had to continue chemotherapy for more than two years, OAW is happy to report that Brooklynn finished her last chemo treatment on December 29, 2014!
There are so many ups and downs that come along with this horrible disease. The things that the kids and their families endure is beyond words. For example, Brooklynn had a rare side-effect from a chemo drug that caused a reverse flow of her liver. This was so rare that St. Jude has only seen this happen one other time. She had to be put on a breathing machine and was in a medically induced coma for 10 days. With a lot of prayers and blessings, and her Wonder Woman strength, she pulled through! Today, Brooklynn is a student in public school for the first time!
A little star-light named Jasmine also received a free photo-shoot from OAW. She is another mini-Wonder Woman who battled Leukemia, though you'd never know it when you look at her bright eyes and huge smile. She has been in remission for a while now, thank the Lord! Her thirst for life can be seen in every picture.
According to the National Cancer Institute, more than 5,000 children were diagnosed with leukemia in 2013. While not all cases result in a tragedy, America has a long way to go before we eliminate this horrible disease.
For those of you who have a child with cancer, or know someone who does, we hope Lexi, Brooklynn, and Jasmine's stories give you at least an ounce of peace and hope for a happy future. They are all pint-sized Wonder Women, and your little one can be just like Wonder Woman too. And always remember that OAW is here to help and support you in your greatest time of need.
Part 1: Ashlyn
By: Michelle L. Cramer, OAW Founder & President
Incompatible with life.
That is the phrase most Trisomy parents hear just moments after receiving their child's diagnosis. Nearly every Trisomy family we have encountered to this point has been told to either terminate pregnancy upon diagnosis, or to expect that their child will be stillborn.
Ashlyn was diagnosed with Trisomy 18 while in utero. After the diagnosis, her mom, Jessica, reports that they saw upwards of 20 nurses, social workers, doctors and genetics counselors and none of them could give Jessica and daddy, Andrew, any hope. Because of her small size, Jessica requested that they monitor Ashlyn's heart rate but "they told me no, because they would not do anything during labor to save her if she became distressed."
Ashlyn was born on September 30, 2014 with a cleft palate. Jessica attempted to nurse her, but Ashlyn would choke because she couldn't swallow. The hospital put Ashlyn on an NG Tube with continuous feedings, but she was still choking and her O2 stats would drop so dramatically that she turned blue. The nurse would rub her chest and they put her on oxygen, but nothing changed, despite Jessica's insistence that they simply decrease how much they were feeding Ashlyn.
"The doctor came in and told me that this is what they expect to see with Trisomy 18 babies, and that I could take her off of everything and take her home to be with her until she passed," Jessica recounts. But she refused to give up, stood her ground and finally got them to lower the feedings.
Ashlyn went home just a few days after arriving and is now three months old and thriving! Though every hospice nurse that comes in to help Jessica care for her comes with the expectation that Ashlyn will die at any minute, because the training they are receiving have them anticipating a struggle for life when there is none.
The contrast between the hospital staff here in Missouri that has been treating Ashlyn and the doctors and nurses at the Shriner's hospital in Chicago (who will do surgery to correct Ashlyn's cleft palate) is stark. Jessica explains:
Shriner's was more concerned about her lip and palate. I told them that Ashlyn had Trisomy 18. The nurse asked about her symptoms. I told them she was no longer on oxygen and was keeping her food down. She talked to the doctor and he said once she was at 10 pounds they would do the surgery. They took pictures, weighed her and measured her. They asked me to me explain a little about the Trisomy 18 to a counselor and that was the end of it. They didn't bring it back up. They treated her like she is a normal baby that just needed her lip and palate fixed so she could eat normally. They treat her like a person not a diagnosis like they do around here.
Ashlyn's first surgery on her cleft palate is scheduled for March 20th. Jessica and Andrew are excited to watch this transformation unfold, giving Ashlyn an even stronger chance at survival.
Hope Anne-Marie was diagnosed in utero with Trisomy 18. Born on January 3, 2014, she graced this earth with her presence for just under two months. One of our St. Louis photographers, Dorinda Peyton, had the privilege of meeting the Hayes family at Cardinal Glennon just a few days before sweet was carried to Heaven on angels' wings on February 23rd.
"My family couldn't be happier with our decision to have OAW come and capture a few very special moments with our daughter, Hope," says her mommy, Chelsea. "Our wonderful photographer [Dorinda] was able to embrace our daughter's spirit, and produced photos that will forever remind us of our time with her. We feel so fortunate to have these pictures, and had no idea how much they would mean to us until our daughter passed away. To us, these photos are priceless, because they give us the opportunity to relive the happiness, love, and joy Hope brought to our family. They remind us that her life, although short, was very meaningful, and that she filled our hearts with purpose. Thank you OAW!"
Tora Thompson, OAW Vice President and a talented photographer, took photos during Hope's celebration of life service too. Read more about Hope's journey and how her family continues to raise Trisomy awareness on the Faith in Hope Facebook page.