I met adorable Mr. Beckett and his family when he was 17 months old. His smile and his energy were truly infectious. We met at Commons Ford Ranch Metropolitan Park on a hot, Austin morning. The light and the surroundings were perfect for this special family session.
Beckett’s Story (told by mom)
Beckett is our first baby and we had a pretty smooth pregnancy. Beckett was born at 37 weeks and 5 days. He was a healthy 7lbs 7oz boy and ready to meet the world. On the second day of Beckett's life the pediatrician that was rounding in the hospital gave Beckett his daily physical. He was listening pretty intently at his heart and at that moment we quickly learned that our beautiful boy had a heart murmur. Little did we know that those few minutes in time was going to lead us on a journey that we never even knew existed. The doctor immediately ordered an echocardiogram to examine and take pictures of his heart. Later that night the doctor personally called us to give us a heads up so that we wouldn't be blind sided the next day when the cardiologist would round with the results and details of Beckett's condition. The following morning, the day we were heading home with our baby boy, the cardiologist came into the room and presented us with devastating news. He told us that Beckett had a pretty large hole in his heart that would most likely need surgery within the first six months of his life due to the location of his hole. We were told that our main goal was to keep weight on him, feed him as much as possible, and watch for physical signs of heart failure (sweating, weight lost, tiring while feeding, etc...) He drew us diagrams and gave us the worse case scenario of Beckett's future. In that moment we held our boy tight and just sobbed. This was not the way the birth of our first child was supposed to go. We thought he was healthy? There was no way that my baby could undergo open heart surgery at his young age, let alone ever! We went home feeling defeated and scared. We decided to seek a second opinion at Texas Children's Hospital, rated number one in pediatric cardiology. At three months old he had a follow up appointment and we travelled to Houston for an appointment at Texas Children's. He checked out well and was not showing any signs of heart failure. He had healthy baby chub on his legs and was eating like a machine! We were told to return in four months for another follow up. At that second appointment we were expecting to hear that he was still doing well, but it was within minutes of our doctor walking in after his echo, that she told us he would need surgery within the next few months. We once again found ourselves shocked and devastated. Our worse nightmare was happening and we were in disbelief. We had hung on to hope all summer that he was going to fight this and not need surgery, but we were handed a different path.
After that October appointment, our case was presented to the board and we got accepted. We went in December to meet our surgeon and then we had a stressful few months of waiting to get our surgery date. We wanted the best surgeon we could get and with the location of his hole we needed the best. There was potential for Aortic Valve complications and because his VSD (Ventricular Septal Defect) was located next to his Aortic valve, the value was stretching out and needed to be repaired as well. Surgery meant he could not go to school for the months leading up to surgery. Surgery meant three months of recovery, which meant no school. Surgery meant my husband and I go on leave from work for 6 weeks to get through pre-op, surgery and post op. After heading to Houston for what we thought was going to be surgery week, we got bumped to a later date. We headed back to Austin and waited again for a call. We got a call a week later, packed it up, went back on leave from work and headed to Houston for surgery. Surgery lasted about 8 hours and we weren't sure of how complicated the repair would be until the surgeon got into his heart. The hole was repaired and so was his valve. That was the longest day and week of our life.
He just had his four month post surgery visit in July, and he couldn't be doing better! As he grows, so will his heart and we will hope and pray that he will not have to undergo a repair in the future, but only time will tell. What is most important now is that he got through his surgery like a true warrior and his heart is pumping and working like it should. He is now considered a child with a “normal heart.”
Beckett has taught us the indomitable will one can have to be a fighter. Beckett goes through life with a smile on his face every single day. Sometimes you don’t understand how you are put in situations in life, but one thing we do know is that the journey of a Heart Warrior is not one for the weary. A heart warrior is a courageous fighter that can literally overcome anything! Beckett has joined this amazing club of individuals and we are proud to call ours one amazing, life long Heart Warrior!
How has this affected your family?
This experience has made our family stronger and closer. We have learned that there is nothing that we can't go through together. There is always a constant question of why Beckett? Why does he have to go through this? We have had to accept that this is Beckett's story and him being a heart warrior is who he is. We always joke about how one day he might be a cardiologist! He has taught us what true strength is. When you think you are having a hard day all you have to do is look at Beckett’s smile and be reminded that his journey was not one he chose, but he got through open heart surgery with a smile on his face the entire time!
What advice would you like to give to families experiencing the same or similar circumstances?
Surround yourself with lots of support and love. Take one day at a time and allow yourself to feel whatever it is you want to feel, whether it be anger, sadness, confusion, frustration, etc..None of it will make sense and you will continue to ask yourself why every, single day. We quickly learned during surgery that these babies are called warriors for a reason. They are the strongest, most resilient people we have ever seen. Beckett's strength got us through the entire journey. Every time we thought we were in the clear another issue popped up and we constantly felt like we had a dark cloud over us, but when we would look at Beckett and saw his smile, we were immediately reassured by his strength that everything would be okay.
What advice would you like to give readers who know a family with a warrior/warrior princess baby? (What can they do to help? )
Our family and friends got us through this journey from all of their love and support. We were so blessed to have people donate to help us with medical bills and provide us meals during our stay at the hospital and in the ICU. If you know someone going through this, giving others contacts so that other mothers and fathers can connect is meaningful because you feel so isolated and alone. We quickly learned that we weren't alone and that this was way more common then we ever knew. We feel automatically connected to ANYONE with a warrior. It is a journey that no one else can understand but those that have been through it.
Is there anyone you would like to publicly thank?
There are so many people for us to thank who helped us get through this. It definitely takes a village. We would like to thank Dr. Tao who found Beckett's heart murmur when rounding in the hospital. We want to thank our amazing cardiologist Dr. Morris who has helped make the best decisions for our boy. Beckett's surgeon, Dr. Heinle and his team at Texas Children's truly saved our boy's life and did an amazing job of operating on him. We had the best ICU nurses that became our roommates and family for a week. Our family friend Kelly for being our guardian angel, watching over my family through this entire process from start to finish at Texas Children's. We also want to thank everyone (family, friends and strangers ) who donated to our Go Fund Me account to help take the financial burden off of Beckett's surgery. Bryce for sharing her heart warrior journey and being a person I could call on any time of day who truly understood how I as a momma was feeling. Beckett's school, Ladybird Montessori School, who put on an amazing fundraiser together for our family! Our family and closest friends who came to the hospital, provided meals and constant support. Last but not least we would like to our moms, Holly and Kathy for taking turns for months both pre-op and post op to watch Beckett while we went to work. We could not have gotten through this without them!
Mended Little Hearts provides patients and families of children with congenital heart disease many services that directly improve their quality of life. Donate to Mended Little Hearts below.
“The meaning of life is to find your gift. The purpose of life is to give it away.” - Pablo Picasso
If you know a family that has a child under one year old with a life-altering illness, birth defect, or injury, lives within 30 miles of downtown Austin, TX, and would treasure professional portraits of their precious baby and family, please nominate them by filling out this form.