I am so delighted to share one of my former student’s journey to becoming a child life specialist. I have been so inspired by her strength and you will too.
Guest Blogger, Lauren Backe; Mother and Advocate
Various media outlets caught wind of our Jack winning the national Starlight Children’s Foundation’s ‘Design a Gown’ contest— where people across the country were encouraged to design a creative hospital gown for children facing challenges in the hospital. He entered the contest for his sister, Everly, who has a Congenital Heart Defect (CHD). Upon his win, 30,000 comfortable, imaginative hospital gowns will be made and distributed in the likeness of his heartfelt creation: hearts and lots of printed glitter! Since winning, numerous people have approached my husband and I wanting to learn more about CHDs and Everly’s journey with it thus far.
I didn’t know much about CHD until July 2017. I didn’t think I knew many babies who had it (turns out, I do know a few: an old neighbor’s son, a classmate of Jack’s brother, a friend of a friend’s daughter….) CHD is the most common birth defect. I asked LOTS of specialists (everyone we saw in July and August) what could’ve caused Everly’s CHD. They all assured me that I didn’t do anything to have caused it. Everly’s genetic testing came back clean. The heart starts as a tube and grows and branches off from there. From all I’ve learned about fetal heart development- it seems to me- it’s just a complete miracle that so many hearts form “normally.”
Everly was born in August. We found out a few months before birth that she had a CHD that would need to be repaired before she left the hospital. I remember the day vividly. After an ultrasound at around 30 weeks, my local OB said the heart looked a little off and we should get an ECHO to rule anything out. Not expecting to hear anything “bad” at the ECHO, I went by myself. I knew the news wasn’t great when the cardiologist said to me “So you came by yourself, huh?” I left the appointment with pictures drawn of our unborn baby’s heart compared to a “normal” heart and the cardiologist offered to call my husband that evening.
After learning her diagnosis, we set up to find the best surgeon for our girl. We are lucky that there are several “3 Star” rated heart hospitals near by. One particular surgeon at one of these hospitals came very highly recommended by just about anyone you asked. After meeting with him, we knew he was the one!
We met with an Maternal Fetal Medicine Specialist (high risk OB) and set up an induction day so that all of the right people for Everly would be ready for her when she was born. A few minutes after birth, the NICU swept her away to get her lines set up to receive medication. They also performed an ECHO on her to get more pictures of her heart outside of my belly.
CHD is 1 in 100 births.
IAA is 2 in 100,000. IAA is about 1% of CHDs.
Everly had the Norwood surgery to repair her IAA at 3 days old. The Norwood surgery for the IAA defect is not commonly needed. We had hoped that Everly would have ONLY ONE open heart/bypass surgery right after birth that would fix the IAA and the VSD. Unfortunately, her heart did not grow as expected between the fetal ECHO and birth, and she was not able to have that surgery (which is a less risky open heart/bypass surgery- STAT 4). STAT levels range from 1 to 5 with 5 being the most complex/dangerous.
Instead, she needed to have a very complex surgery (STAT 5 level). The Norwood corrected the IAA, but not the VSD (some parts of her heart needed time to grow before repairing the VSD). She will need to have multiple open heart/bypass surgeries in her life.
In October, Everly was briefly hospitalized for a virus. Thankfully, we were able to take care of her the majority of the time at home with home oxygen tanks/machines.
She had a “cath” (cardiac catheter) in November 2017- this looked at the functioning of her heart to determine next steps- it’s a surgery with intubation and anesthesia but we were only there one night- it is not “open heart”. In the cath, they were able to do some “ballooning” to help buy a little bit of time.
In December 2017, Everly had an additional shunt put in (STAT 4) because she was not yet big enough for the “full repair”- the Rastelli procedure. She now has two shunts- one from the Norwood and then the additional one put in, in December.
In April 2018, Everly was briefly hospitalized for a virus- she needed some extra IV fluids to make sure the 2 shunts in her heart didn’t risk clotting.
The Rastelli surgery will be next. This will put a conduit in- tube and valve and fix the VSD. She needs to be big enough for the Rastelli (STAT 3). The conduit is bigger than a shunt so there needs to be enough space in her chest/heart for this conduit to fit. After the Rastelli, we will hopefully have about 3-5 years until the next open heart surgery.
Approximately every 3-5 years, she will need to have the conduit replaced. When she is big enough for an adult size conduit, the valve in the tube can be replaced through her leg (vs. an open heart surgery). However, the adult size conduit will not last forever and she will need to have the conduit replaced (more open heart surgery). It is too hard to predict how many valve and/or conduit replacements she will need in her lifetime.
Everly is very medically fragile currently since her heart functions like it only has one chamber (not two like a normal heart), but will hopefully be considerably stronger after the Rastelli surgery. The time between the Norwood and the Rastelli is called the “interstage”- Everly is part of a “Norwood Clinic” where we have a lot of specialists for just a few patients because of the extreme fragile-ness. (If Everly had had the one time repair we initially had hoped for, we wouldn’t be part of this “group”). We hadn’t planned for this (the Norwood surgery) so we didn’t know the specialists. BUT we were so lucky to be handed this amazing team. They are truly amazing and have helped us so much in these very critical months. We will continue to be part of this “Norwood Clinic” until the Rastelli.
So in short…. What have we learned over the past 10ish months?
Choose joy each day, find joy in small things, celebrate all victories- even small ones, take things one day at a time, try not to take time with family and friends for granted, try to live in the moment, try not to sweat the small stuff, breathe…. This little girl and her strength and Jack’s ability to adapt to all the changes has taught us so much in 9 short months. Everyday, we are grateful for both of them. Perspective is everything.
Follow Jack and Everly on Facebook.
I am over the moon to feature an extraordinary Certified Child Life Specialist on the blog today. Katie Taylor, has taken her passion of working with parents and children from the hospital walls to the radio waves. She is empowering them to share their stories and connect with other families.
Guest Blogger, Katie Taylor founder of Child Life on Call
I was kneeling down next to a new mother in a dark pediatric intensive care room. The only light was from the sun peeking through the curtains and the monitor from the three IV pumps connected to her 3-week-old daughter. While I introduced child life services and education on ways to continue bonding with her newborn, despite their abrupt and emergent hospitalization, she said something powerful.
With tears in her eyes, she looked right at me and said, “I feel like I’m the only one in the world feeling this way. I feel so alone. So helpless. Tell me someone else has been through this before.”
It hit me like a ton of bricks. Her words lit a deep fire within me to do something more; Child Life On Call podcast was born.
I’m a huge podcast fan. Listening to them takes me to another world. Whether I’m laughing or learning something new, I leave my commutes feeling a sense of renewal. What was missing in the podcast world, I discovered, was a community for parents who feel the overwhelming emotions associated with having a child who has an illness or medical condition.
I don’t have a voice for radio, I didn’t have any of the equipment (not even a desktop computer), and I had absolutely NO clue about how to start a podcast, but I wanted to create a resource for parents and I felt podcasting was the way to do it. Parents could plug in their earbuds as their child slept in the hospital bed next to them and be transported to a community of stories and support. I had to make this happen.
One year later, the Child Life On Call podcast was published. Although the quality isn’t great and the technical errors have given me sleepless nights, the mission has been steadfast. The podcast features stories from parents of children with an illness or medical condition.
In Season 1, parents courageously describes personal and emotional experiences associated with having a child who has been through medical experiences. Season 2 will feature more stories from parents and from child life specialists currently working in the field.
My hope is that this continues to be a resource for parents as they sit in the loneliness that is hard to avoid when you have an ill child. My hope is that child life students recognize the weight of the vulnerability shared by these parents and the honor we have as child life specialists to support families. My hope is that this grows into a community that truly does support parents and families experiencing hospitalizations and illness.