On today's episode of the podcast, Katie interviews Rylee Neal who decided to become a Child Life Specialist from her past experiences being hospitalized with a heart condition called tetralogy of fallot. An experience with a Child Life Specialist during one of her...
Episode 117 | [Repost] Ashlyn’s Story: A Son with VACTERL Association
Podcast Show Notes
This is a very worthy repost episode, as April is Limb Difference Awareness Month. We first shared Ashlyn’s story over a year ago, but I wanted to bring it back. The two things that I continue to take away from this story is the true partnership between Ashlyn and her husband, as well as the importance of having fun with the cards you’re dealt. I encourage you to listen to her story, follow her on Instagram, and share her page and this episode so others can learn more about limb differences.
In this episode, we talk about…
[4:55] Ashlyn’s family
Ashlyn is originally from Indiana, but she currently lives in Georgia with her husband and her son, Myles.
[6:07] Ashlyn’s pregnancy with her son
During her pregnancy, Ashlyn’s early testing all came back normal. She recalls that she didn’t feel him moving that much in retrospect, but she had nothing to compare it to because it was her first pregnancy.
Around 20 weeks, they went in for the anatomy ultrasound. That is when they found out there were some concerns. After the appointment, they received a call saying they needed to come back in to get better images of his kidneys and his heart. They were sent to a maternal and fetal specialist for a more clear ultrasound. While Ashlyn and her husband were alarmed, they also felt like the new images would clear this up.
They went to this appointment around 25 weeks, and the specialist seemed to be trying to play it cool. He explained his concerns, and he shared that he still was not seeing parts of the heart and kidneys in addition to the end of the spine. To rule out some concerns, the specialist suggested a genetics test. Ashlyn was hesitant to do an amniocentesis, but she did it because the doctor explained it was the best way to rule out genetic concerns.
About a week later, the results from the amniocentesis came back normal, which was a relief. At the same time, however, there were still concerns about the baby’s heart, kidneys, and spine. Ashlyn was then referred to a fetal cardiologist and encouraged to get a fetal MRI. It was certainly inconvenient to go to all of these appointments, but Ashlyn says that the most annoying part was the timeframe as they waited for results. Sometimes they had to wait weeks to get results.
Luckily, the results from the fetal cardiologist came back quickly. Everything checked out fine. When they went to get the fetal MRI, Ashlyn wanted to speak to someone right away. She was told that the doctor would have to review it, but they were given a CD of images to review on their own. Ashlyn and her husband realized they didn’t have anything at home that they could use to load these images on a CD, so they took it to their local library to look at. They thought everything looked fine, and they tried to reassure themselves.
[14:47] Getting the results from the fetal MRI
The results from the fetal MRI did not come back until Ashlyn was about 36 weeks pregnant. It took two months to get the results, and she had been calling. When the results came back, they were referred to a neonatologist. Ashlyn didn’t understand why the specialist couldn’t explain what was going on, but she was anxious to finally hear the results.
The doctor told them that there were abnormalities with the baby’s kidney and his gastrointestinal system. He had clubbed feet, and his leg measurements were off. In addition, it appeared that his arms ended at the elbows. They were confused, because they thought they had seen hands in the images. The doctor explained that it seemed as though his hands were at the elbows.
Ashlyn recalls that she and her husband were completely overwhelmed with this news, while still trying to prepare themselves to have a baby. Ashlyn had him at 39 weeks, and they had only just found out what was going on. They felt anger and sadness, because they had waited so long for answers. Ashlyn had so many questions about whether these issues could have been prevented. The doctors wouldn’t know more until Myles was born and they could do more tests.
They had planned to go on a babymoon the weekend after that appointment, and Ashlyn wanted to cancel it. She just wanted to stay in bed until he was born, and she felt disconnected from her pregnancy. It didn’t feel like something to celebrate, and she didn’t know how she would be able to enjoy their trip.
[23:45] How Ashlyn and her husband renewed their partnership
The night after the appointment, Ashlyn’s husband came home and gave her a small box. He told her that he knew the day was really hard, and when Ashlyn opened the box she found a gold necklace that had ‘Myles’ engraved on it. She immediately felt more at ease, and she shares that her husband has always been able to settle her. Ashlyn cried in his arms until she was exhausted, but it brought her to the realization that Myles is their son and they are going to give him the best life, no matter what. They have always been great partners, and this experience only strengthened their bond. She knew that things were going to be okay because they can do anything together.
They did end up taking the babymoon, and it gave them an opportunity to talk about things they had been avoiding for the last couple months as they waited for test results. They realized they had to stop looking so far into the future, and they had to focus on what their son needed now. It was a great opportunity for them to talk about their feelings, and laugh together as well. Ashlyn and her husband returned from that trip with a renewed sense of partnership.
[30:29] Myles’s birth and NICU stay
Myles was born via C-section, and Ashlyn and her husband only got to see him briefly before he was taken to the NICU. When Ashlyn was moved to the recovery room while the epidural wore off, she and her husband looked at a picture he had taken of Myles. They were at a loss for words, even though they were technically prepared for it.
The rest of the day is a bit of a blur for Ashlyn, but family members came to visit. Some of them were able to go see Myles at the nearby children’s hospital, but Ashlyn had to stay in the hospital to recover from her C-section. Her mother and mother-in-law were talking about how beautiful and sweet he was, but Ashlyn still felt so disconnected from him. She had spent most of her pregnancy trying to figure out what was going on, and she couldn’t yet picture him as somebody with a personality.
When Ashlyn was allowed to visit Myles, they were able to take him out and hold him. They took their first family picture, but the whole thing still felt surreal. Am I really his mom? Can I really do this? Ashlyn didn’t feel like anything was coming naturally to her, like people told her it would. After Ashlyn was discharged, Myles remained in the NICU for about a month. He had surgery for his colostomy bag during that time, and Ashlyn and her husband went to the NICU every day.
[41:17] Getting the diagnosis of VACTERL Association
While VACTERL was mentioned early on, it was never confirmed. They were told they would need to do more testing to confirm it once he was born, because you have to have at least three characteristics of VACTERL association in order to receive the official diagnosis. They did more genetic testing, but still nothing came back for Ashlyn or her husband. So while there did not seem to be any rhyme or reason to why these things happened, they were able to confirm the VACTERL Association diagnosis based on Myles’s genetics.
[42:34] Bringing Myles home from the hospital
They were able to bring Myles home around Ashlyn’s husband’s 30th birthday, and Ashlyn recalls quickly falling into depression. They didn’t go out much, and they often felt like they didn’t know what they were doing. They had to deal with the colostomy bag, and they had a lot of doctors’ appointments to keep track of.
Ashlyn felt happy about being Myles’s mom, and she wanted to do all the “new mom things”. At the same time, however, she was still angry. She was still sad. She still wanted answers. She wanted things to feel “normal”. It got to the point where she couldn’t even leave the house. Ashlyn recalls a trip to the grocery store where she couldn’t get out of her car, because she cried seeing other kids. She adored her child, but she longed for things to be different.
As the weeks went on, Ashlyn could see her husband starting to feel better. She asked him how he was so okay with everything, and he told her that he was still sad. He had, however, chosen to think differently. He chose to let go of what he thought should have happened. Her husband motivated her to get out of that whole. Ashlyn was tired of being envious and she did a lot of praying and reflecting to change her mindset and appreciate what was in front of her. She had her husband and her son, and Myles was surpassing expectations every day. Ashlyn started to find the strength and peace that she didn’t know she had.
[49:37] How Ashlyn changed her mindset and coped with grief
Ashlyn affirms that her mindset changes and coping did not happen overnight. She had to make the effort every day to grow and to change. She realizes that she will never go back to who she was before, because this experience with Myles has changed her forever. She wants her husband, Myles, and herself, to all be better for this experience.
[51:40] Connecting with other parents of children with special needs
Although Ashlyn was journaling, she craved connection with others. She decided to make her Instagram account public rather than private, and she started posting about Myles. She began to receive messages from other moms – some of whom had children with VACTERL and others that had children with limb differences or other conditions. Ashlyn shares that these connections have given her hope, because she has gotten to hear about older children that have VACTERL. She has also had the opportunity to connect with other mothers who are advocating for their children, and that inspires her to continue to do the best she can for Myles. She wants to be a better version of herself, so she can take on the world with him.
Ashlyn admits that she didn’t initially look to connect with other mothers because she was too far into her depression. She felt like she was the only one going through this, and now she feels so blessed to know other mothers with similar experiences. She is so grateful to have such an inspirational community around her.
[57:58] What Ashlyn has learned from her son
Myles has taught Ashlyn patience. She describes herself as a “planning person” and her husband is very goal-driven, and this experience has taught them that they are not as in control as they once thought. They really have to take things day by day, because they have so many appointments and expectations can change quickly. Ashlyn has had to realize that she does not always have the answers, and she is learning to be okay with that.
[1:01:24] An update on Myles
Ashlyn describes Myles as “very much a happy baby” and a “mama’s boy”. They were working on walking. Some children with VACTERL use prosthetics, but early on Myles showed signs of being able to use his legs. They support him with a walker, and he has started to walk backwards.
[1:03:25] Ashlyn’s advice for other parents
While Ashlyn acknowledges that she is still trying to figure a lot out herself, she advises parents to have patience. She also suggests building strong relationships with your child’s therapists, as working together will help your child get to the next milestone. Ashlyn also talks with Myles’s therapists about different resources and ideas she finds online. Finally, Ashlyn urges parents to enjoy every day. Appreciate the little things and th progress your child makes along the way.
CONNECT WITH ASHLYN:
Have you heard? The Child Life On Call mobile app for parents, kids and their care team will be available in 2022. Sign up to stay informed here.
Child Life On Call is a community of parents and professionals that share ideas, stories and resources to help YOU navigate your child’s unique experiences. We give you strategies to support yourself and your family through life’s challenges. We are so glad you are here.
You Might Also Like…
Episode 171 | Dr. Kate Lund – Growing up with Hydrocephalus
Katie along with co-host Mijha from Jambo books interview Dr. Kate Lund, TedEx speaker, clinical psychologist and hydrocephalus warrior. She brings an incredibly important perspective as provider, patient and parent. Dr. Lund shares with us how the support she...
[Child Life 101] How to Support Kids in Pain
As a child life specialist, I know that pain can significantly impact children. It can affect them physically, emotionally, socially, and cognitively. Research has shown that uncontrolled pain can lead to long-term effects such as stress, anxiety, and depression, as...