Today is a monumental day for babies in Ohio. Governor John Kasich signed Senate Bill 4 into law, the CCHD screening bill.
The law was the result of years worth of work by many parent advocates, advocacy groups and organizations and countless other people who wrote or called their legislator.
In honor of the Ohio bill signing, we’re sharing the testimony provided by the Capo family in honor of their daughter Sophia. Her parents were first alerted to a problem because of pulse oximetry. Sadly, Sophia’s heart didn’t last, and she passed away days later, but her parents were grateful for the extra time the technology gave them.
Sophia Capo. Picture thanks to the Capo family.
“Good Morning Chairman and members of the Committee. I would like to thank you for the opportunity to speak to you today regarding S.B. n.o. 4. My name is Lauren Capo and I am here today with my husband, Tony. We are here today to give a voice to children who have died because of a Congenital Heart Defect.
On May 27, 2012 we were blessed with the birth of our third child, our daughter Sophia Isabella. With ten perfect fingers, ten perfect toes and a head full of beautiful dark hair, she was breathtaking. On the outside she was a healthy baby girl, on the inside she was living with a broken heart and her visit to Earth had just begun, only to end 15 days later. Sophie had a complete A/V Canal Defect and Coarctation of the Aorta. These are two of the many complex Congenital Heart Defects that babies are born with every year. We were lucky enough to know about one of Sophie’s heart conditions prior to birth, one was not detected until 2 days after she was born due to a pulse oximetry test. Many parents are not fortunate enough to have their child’s defect detected in utero. Had we not known about Sophie’s heart defect she would have seemingly been treated like a normal “healthy” newborn at birth. Sophie had good APGAR scores, was eating well and thriving in her first 36 hours of life. With the pre-diagnosed A/V Canal Defect that Sophie had, many babies do very well within the first few weeks to months of life. We had been told by her Cardiologists that she would most likely get to come home with us for a while after her birth but would be followed closely by her Cardiologist until it was time for her surgery. Within 48 hours of her birth however they discovered her second more concerning heart defect because of her low oxygen saturation numbers. She was immediately intubated and life-flighted to the Cleveland Clinic, where they would try to save her life. Her health had declined rapidly over the course of just a few short hours.
I will not go into the statistics that surround the benefit of Pulse Oximetry testing at birth, I am sure that you are all well aware of them. Instead, what I am asking of you today is to think about this bill as a parent or a grandparent instead of as a legislator. How could this bill affect you, your children, your grandchildren? What if your child or grandchild was born with a congenital heart defect and was not given the opportunity of detection through such a simple and inexpensive test? This bill would suddenly become so relevant to you and those you love. Pulse Oximetry testing is truly the pulse of prevention. It has been said that 1 death is a tragedy, hundreds of thousands of deaths, that is a statistic. Please do not let our child or the thousands of others who have died become a statistic to you. Passing this bill can truly save lives, it can give children a better chance of surviving a Congenital Heart Defect because it can be detected earlier, before a child is in dire need of medical attention.
For me and my husband, being a proponent for this bill gives us the opportunity to share our beautiful daughters life with so many others. Sophie’s life, changed ours in ways we never thought possible. She taught us how precious life truly is and hope that her story may contribute to the passing of this bill. On May 27th, Sophie would have turned 1. I realize that there will be no cake with candles, no icing covered face and no party but want our daughter’s presence here on Earth to help others. Many people have asked us why we advocate for Pulse Ox testing, our daughter died and it didn’t save her. To those who ask, I simply say “time”. Pulse Oximetry detected our daughter’s second heart defect and they quickly worked once it was detected to try and save her life. Because her second defect was caught when it was, it bought us precious time. In 15 days, we were able to create family memories and we will carry those with us for the rest of our lives. We celebrated my husband’s birthday, her sister sang to her every night and her brother would kiss her hands each time he visited. I had time to talk to her about her family and tell her in great detail about each and every one of them. I sang to her, all of the song’s I sang to her sister and brother as babies and I was able to attempt giving her enough kisses to last her until I would see her again. 15 days is not a lot of time, but ask any mother and father if they would ever trade it for the world and I am certain the answer would be “no.” The time we were granted with our daughter allowed us to memorize every curve of her face, the way she smelled and allowed us to tell her just how much she was loved.
Sophie passed away in the early morning hours of June 11, 2012, in my arms. We will never get the chance to stand up as her parents in the way that we wish we could. We will never take her to ballet, dance class or attend her parent teacher conferences. We will not get to see her first day of Kindergarten, her first high school dance or her Wedding Day. So we are here today as Sophie’s mommy and daddy, the only way that we are be able to represent our daughter and “show up” on her behalf now. If her death can affect any one of you or influence you to vote for this bill, perhaps her life can mean something to others, because it meant so much to us. Tiny moments we take for granted, comforting your child because they are afraid of the dark, kissing scraped knees and giving advice, it all may seem trivial but in the grand scheme of things, this is what we sign up for. I will never have that with my beautiful girl and will always wonder what she might have been like or who she would have become but pray we can prevent this heartache for another family. As a picture in our home reads…”Once upon a time there lived a princess named Sophia.” and that princess did live and she left her mark on our hearts forever.
Tony’s Testimony – So why are we here advocating on behalf of Senate Bill 4? If this bill would have been law last year when Sophie was born, nothing would have changed for us. A Pulse Oximeter was placed on Sophie as soon as she was born and she was monitored continuously. So for us, the results would have been the same.
Our daughter is gone. The passage of this bill will not bring her back, and yet we have driven two and half hours – twice- to come here and advocate on behalf of SB 4. We have reached out to Sophie’s cardiac surgeon and the doctor who would have been her pediatrician to garner support for this bill. We have talked to anyone that would listen about Senate Bill 4 and why it’s important that it passes.
Why? What’s in it for us? What’s in it for us is hoping that by telling Sophie’s story and advocating for this bill we can spare other parents the crippling fear of seeing their daughter or son critically ill and being life-flighted to a different hospital. Maybe lending our voice will prevent another set of parents of having to witness the soul wrenching site of nurses performing emergency CPR on their tiny son or daughter. Maybe we can spare other parents the sickening hopelessness of realizing that their child isn’t going to get better and watching, as if in a bad dream, as a nurse slips a do not resuscitate bracelet around their child’s ankle and then a day and a half later, the deafening silence as the life support machines are turned off one by one. Maybe by telling our story, I can prevent another Dad from having to whisper in his daughter’s ear how much he loves her, and will always love her, and that’s it’s ok to go, we know you can’t stay. Hopefully, we can prevent even one set of parents of having to look into their living children’s tear filled eyes and explain why the sister or brother they so desperately wanted won’t be coming home.
That is why Lauren and I are here. One of my son’s favorite movies is Dr. Seuss’s Horton Hears a Who, and there is a line in there that he loves to quote and has taken on a new and more powerful meaning for us since Sophie passed. The line goes “A person is a person, no matter how small.” By passing this bill and making Pulse Oximetry screening mandatory on all newborns, you are helping to save the lives of these little persons that have undiagnosed congenital heart defects. Thank you so much for your time today and for the opportunity to put a face of a Congenital Heart Defect behind this bill and how it truly can impact families. We appreciate this opportunity more than you could ever know and hope that her life may live on in the hope and promise of a new life that will be saved through this Pulse Oximetry testing mandate. Thank you.”
Blog posts are written by both Save Babies Through Screening Foundation representatives and others not officially affiliated with the foundation. Posts do not necessarily reflect the views of SBTS. Posts are not medical advice. Please talk to your physician.