“Our son, Myles, was born with several birth defects that led to his diagnosis of the VACTERL association, which includes seven birth defects or anomalies. In order to be diagnosed, you must have three or more of the characteristics. Myles has four of the characteristics, which are vertebrae, anal atresia, renal atresia, and limb differences. Oh, and did I mention there is a less than 1% chance a child is born with this condition. Yeah, I know. Crazy.
For us, it was a very tiring and emotional journey to finding out Myles’ diagnosis. The concerns started when I was around 20 weeks and I went for the anatomy scan. Also around this time, we were able to find out the gender. After this appointment, we were told we had to see a fetal specialist. A nurse called us and explained they needed better images and they were having trouble seeing the full heart and the right kidney. Now, this was our first baby and up until now, all seemed to be going well. We were completely thrown off by this call.
We went to the appointment and ended up needing to get an amniocentesis test, which came back normal. We were still left with the same concerns, along with the new finding, which was a single umbilical artery along with a cyst. We ended up being referred to a fetal cardiologist and fetal MRI. The results for the heart came back normal but it was the MRI that told it all.
Around 36 weeks, we had an appointment with the NUCI doctor at the hospital we were delivering at and were told he would go over the results of the MRI. Now, just so I am clear, I was 20 weeks when the concerns started and I was 36 weeks when we were given the final results of all the testing. So just imagine how tired and emotionally drained we were by then. Yeah, exhausted!
During the appointment, the doctor went over everything we were told previously and some concerns we had no idea about. He talked about his right kidney being fused with his left, his imperforated anus, gastrointestinal concerns; and finally, we talked about his limbs. Both legs were measuring shorter due to an absent bone, he only had four toes, his feet were clubbed, his forearms were missing and his hands were also missing digits.
At 39 weeks, our son, Myles Weston Ray Outlaw, was born on July 6, 2019. It was just a few weeks after finding out what was going on and still, we choose to stay hopeful. When I think about Myles’ birth, it brings back so much heartache when it should have been the happiest day of my life. Personally, I was stuck in the ‘why us’ frame of mind, and I was disappointed this was happening to our son and to me and my husband. I was mad and I wanted answers. I can remember when he was delivered, asking my husband, ‘Is he okay? His arms and legs, are they there?’ I held Myles before he was taken to the NICU and at the time, my husband told me things were fine.
After they closed me up, I had to go to the recovery room and that’s when I finally saw the full-body picture the nurse took of Myles. To be honest, I couldn’t look at it. His arms and hands were close to his body and his fingers looked to be coming from his elbow. His legs were both curled in, his feet were facing upward, and he also had a huge cyst on his belly button, which was from the umbilical cord. I was in total shock.
Throughout my entire pregnancy, I definitely lacked that connection so many mothers gain when pregnant. I think we were so consumed with what was going on, I forgot to actually enjoy it. So many what-ifs and results had me unhappy about what the future held. But mostly, I remember how hard we prayed and how I hoped for this big miracle to happen. I would read so many scriptures and devotionals just to get out of bed. Our pregnancy was exhausting and nothing like I had planned. I can remember everyone around us being so happy, not having a clue what was going on. Up until when we found out more, I would almost put on a face. When anyone would ask me about kicks or movement, I never really understood why I wasn’t feeling a hand or a foot but I acted like I did. I would hate to talk to friends who didn’t know it all and would talk about how cute he was going to be. It was painful to hear family talk about his height because of his dad or what activities and sports he would play. I knew deep down, there was a possibility we weren’t going to experience those things. How cute he was was the least of my concerns. I would pray for God’s will to be done but I still wanted it my way. I didn’t really prepare myself for anything other than what I was praying for.
Myles spent about 4 weeks in the NICU and the day we were finally discharged, it was such an overwhelming day for us. We were leaving with a list long of outpatient appointments, colostomy training, and still no answers. During our NUCI stay, we went through genetic testing to find out that Myles’ condition had nothing to do with genetics but they finally officially diagnosed him with VACTERL.
The days after we were discharged were mostly spent in our bedroom. My husband was still on leave and we rarely left the room until one day, my husband got up and decided to put clothes on go downstairs. Throughout all of this, my husband has always been the one to push forward or force change and I truly love that about him. It wasn’t until after he went to work I quickly fell into depression. Once again, I was back into the mindset of, ‘Why us? Why our baby?’ I got to the point where I wouldn’t leave the house and wouldn’t let anyone come over other than family. I was digging a hole and I was bringing Myles into it.
I can remember the few times I tried to go out and I would just cry at the sight of other kids. I would take Myles to an appointment and find myself looking for babies that looked like him. It feels lonely when you look around and you don’t see other families like your own. I would even go on social media and just be unhappy seeing other families or women having perfectly ‘normal’ babies and having a ‘normal’ pregnancy. I would envy them and become so mad. I couldn’t be happy for others and that was just not like me. Although I was still being Myles’ mom and beginning to build the bond I thought I missed out on, I was longing for a different life, a life I thought was better for Myles. Slowly, Myles showed me that he loved his life and he loved us.
He started to grow and develop his personality. His smile captivates anyone and everyone who sees it. He started figuring out things and using his hands and feet. I started to realize how determined he was and how he showed progress with just time. He went through two surgeries: one to help correct his ankle for his clubbed foot while they were being cast and the second one to correct his anal atresia. I began seeing Myles in a different lens. I took the lens off of ‘why him?’ and started seeing his life without limitations. I can remember looking up one day and seeing my husband was in a different place with all of this. He was happy and was choosing to feel and think differently. I realized where I was at was not only affecting me but also my husband and Myles.
I wanted to be happy and the crazy thing is although I could be Myles’ mom and do the everyday things for him, I was not actually showing up. I had to make the decision every day to show up but I couldn’t just do it physically. I had to show up physically, emotionally, and spiritually. I had to change my mindset and acknowledge to God what I thought he should have done and accept what he has planned for Myles and our family will be even better than what my expectations were. I had to make the decision to be a better version of myself. When I look back on those months when I was so deep in my depression and the hole I was in, I realized the seconds, minutes, hours, and days I was allowed to pass by. I had to make the decision I wasn’t going to let another day go by.
I don’t have all the answers but I know I need to show up every day so I can see the ‘why.’ Eventually, Myles will be the one that owns his story. When I think about all the things Myles is doing now, it makes me excited to think of all the things he will overcome and how he will add to this story. Of course, naturally, I would want things to be different, but Myles is exactly who he is supposed to be. I honestly cannot picture him any other way. He has shown me so much strength and love that surpasses any expectations. I know in this life, my purpose is to be Myles’ mom so he can live out his purpose and his ‘why.’
I know for any new moms going through something similar, it isn’t easy but what you’re feeling is valid and real. I think the only way you can get to the other side of your disappointment is to feel those feelings and acknowledge them. I truly believe if you don’t, then you will look up one day and see you have missed out on all the amazing things your child is doing and will do. Remember, the future is not meant for us to figure out. All we can do is show up every day for our kids and partners one day at a time.”
This story was submitted to Love What Matters by Ashlyn Outlaw from Smryna, GA. You can follow their journey on Instagram. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
Read more inspiring stories of children with unique and special differences:
‘There’s an issue with her hand.’ I was scared. It was inverted backwards, and she only had 3 fingers.’: Mom ‘shocked’ after daughter born with limb difference, ‘I was determined to protect her every way I could’
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