Heart Hero of the Month & Des Moine Superhero Heart Run Ambassador October 2023

Story by, ❤️ Mom Pam

Wesley was born with Truncus Arteriosus in February 2016.  Wes’s heart journey started before he was born.  At our 18-week ultrasound, it was determined Wes had a heart defect and at 23 weeks of pregnancy, the University of Iowa Stead Family Children’s Hospital was able to diagnose his heart defect as Truncus Arteriosus.  Looking back on this diagnosis, worry and fear filled our hearts instead of joy and anticipation moving forward.  The excitement and everything normal about bringing a child into this world changed with one diagnosis.  Instead of decorating the nursery or buying baby gear, we were making plans to fly to Philadelphia to have Wes and his surgery soon thereafter.  The unknown before Wes was born was all-encompassing. 

Wes was born at the Children’s Hospital of Philadelphia in a special delivery unit for sick babies and healthy moms.  He was stable when he was born.  Wes had his first surgery at three days old weighing just under six pounds.  Shortly after Wes’s first surgery, he was bleeding internally from a line hitting his liver.  This was our biggest scare of his recovery.  He lost a lot of blood, but they were able to stabilize him and his recovery moving forward was quicker than expected.  Wes impressed us all at a young age with his resilience.  When the doctor came out to give us an update after Wes’s internal bleeding, the doctor let us know that Wes was still fighting them and throwing around his arms.  We were discharged with Wes ten days after he was born.  The doctors had to convince us that it was okay to take him home as recovery was originally supposed to be two to four weeks.  We loaded Wes up in a taxi and his first night out of the hospital was spent at a Homewood Suites in some crib contraption we bought on Amazon because I didn’t think putting Wes in a drawer was a good plan.  Looking back, the drawer was probably the better option.  We flew back to Ankeny, IA, our hometown with Wes just eleven days after he was born. 

His next open-heart surgery was in 2021 during the end of the pandemic when he was five years old.  They upsized his conduit and attempted to repair his aortic valve, but it was not as successful as we had hoped.  This led us to his third surgery in May of 2023 at seven years old.  Wes received a new mechanical aortic valve and a few other parts.  I am happy to report Wes is thriving.  There will be more surgeries in the future when Wes outgrows this valve, but for now, we are thrilled with the outcome. 

Wes’s toughest surgery was when he was five.  He was old enough to understand what was happening, but young enough to be so scared of what he couldn’t control in the hospital.  Wes made it clear many times he wanted the nurses to leave and sometimes he wasn’t so polite about it.  His recovery was quick until we got to the step-down unit and then Wes continued to spike mystery fevers that kept us in the hospital for an additional five days. Wes always tells us the best thing about the hospital is leaving.  I believe he got that right.

Wes’s surgery this summer was a twelve-hour surgery, but his recovery was straightforward.  Wes again was determined to leave the hospital.  We encouraged him that if he did what was asked of him, it would get him out the door quicker.  He didn’t want to walk most days with the physical therapist, but he did it.  He didn’t like being poked and all the cords being removed, but he powered through. 

He was discharged after nine days and literally ran out the door. 

Wes has a sister, Clara that also plays a key role in his recovery.  At the time we were expecting Wes, Clara was seven years old.  She was wiser than us as when Wes was diagnosed with a heart defect, we were so very upset and Clara crossed her arms and said, “Well, I’m still going to be a big sister.”  She was right.  We have been so fortunate during our stays in Philadelphia to be able to have Clara right by our side and her brother’s side.  Clara is the first person he asks after surgery. 

All heart warriors are born with the superpowers of courage and bravery and Wes is no exception.  Wes powered through his recovery this summer counting down the days until he could do pushups and ride his bike.  We smile every time to see Wes running and playing full throttle these days.  It is truly a blessing.

The Help-a-Heart organization has given our family hope and encouragement.  We found Help-a-heart shortly after we got back to Iowa with Wes.  I wish that I would have known about this organization when I was expecting Wes.  It is so helpful to have a common community.  It is great to have parents that can encourage and relate to what you have been through.  They have prayed for Wes and our family. 

As a parent, having a child with a CHD diagnosis is a roller coaster of emotions.  One minute you are on a high as Wes is out of surgery and the next minute you are knocked down because Wes crashed, and you are asked to wait in the waiting room for what feels like forever.  I have learned that time is not proportional as I wait and wait during surgeries.  A minute feels like a decade when your child is on bypass and yet he is already seven years old which seems impossible.

Help-a-Heart continues to provide scholarships and meals for our local heart families in need.  These little or big gestures mean so much when we are in the thick of surgery preparations or at the hospital.  We are so thankful to have found this group and appreciate all the support and love they have given to our family over the last seven years.

We also thank our friends, family, and community for their continued support.  Wes’s school last year wore red to send Wes off for surgery.  When we showed up to have lunch with Wes, the playground was 100% red.  Every kid in his elementary school wrote him a card and wore red wishing him well.  It is sometimes overwhelming to see the support we have received and continue to receive.  We can’t thank Prairie Trail Elementary enough for their send-off.  They are one of the reasons Wes’s recovery was so successful.  Wes knew he had a whole lot of people cheering him on in Iowa and across the country and even Argentina. 

Wes looks forward to the Superhero Heart Run every year as it is a family favorite.  It is a race to celebrate our Heart warriors and heart angels and all their successes.  This year Wes is looking forward to a faster pace with his new valve.  He might even try for the 5K seeing he has so much energy.  He loves to be recognized for his bravery and meet the other kids who are battling CHD just like him.  We are proud of each Heart Warrior and angel and look forward to celebrating with them at the race for all they have accomplished!

These kids weren’t born with a perfect heart, but they were born with courage and determination.  Keep fighting Heart Warriors.  We are so proud of you.