February is Congenital Heart Defect awareness month. If you know us you know a beautiful CHD warrior, our daughter Béibhinn Hope. You know someone who has suffered more in her short life than most people do in a lifetime, who wears her battle scars beneath her hello kitty t – shirts with a smile, who cried silently on a vent, but which silence tore through her parents hearts, You know someone who spent the first week of her life been pulled and dragged from one invasive test to another every hour on the hour, who at just eleven months old went through a six hour open heart surgery and woke up terrified in ICU without her parents as parents are not allowed in ICU after 10pm.
If you know us you know a couple who first heard of CHD half way through their pregnancy, who heard the soul destroying words “I am sorry your baby’s heart does not look normal” you know a couple who were told their baby would die once she was born and a couple who lived four months with that terror, you know a couple who handed their baby over to surgeons knowing that they would cut her little chest open and try to repair her broken heart, who knew the incredible risk of a three staged ( triple) six hour open heart surgery on a tiny eleven month baby. You know a couple who walked through the doors of ICU and saw their child fighting to live tied up to numerous machines that made it difficult to recognise their beautiful little girl, who spent countless hours by her bedside praying to god to let her live.
If you know us you know of three people who have fought every step of the way for every precious victory and rejoiced at every single milestone. CHD families fight a war every day of their lives, they become very good at hiding their pain and fear from family and friends and sometimes even themselves, they don’t speak very often of the silent tears they shed, which are more often than you think, they don’t speak about the future and the “what ifs” because this consumes them and saying it out loud might actually make it real, their children look perfect so it’s easy to hide, they fight their battles silently behind hospital doors, operating theatres, and ICUs. This family are one of the lucky ones. They found out in advance, they had time to prepare;their baby was born safely near a hospital equipped and experienced who knew what to do with a CHD baby. Others are not so lucky……..
CHD does not discriminate between the rich, the poor, the famous, the high flyers, and the middle class. It touches every corner of the world. All heart families dutifully help spread the word and facts on CHD. It is also important to bring to light the reality of living the life of a CHD family and the severity and seriousness of this condition.
CHD Awareness is a part of our everyday life. We didn’t choose this life, it chose us. We are a family who try every day to live a normal life and allow our Daughter to do the same. We hug each other tighter, we love each other stronger, and we don’t take each day for granted. We believe in Miracles. We live with one every day.
If you read this blog and follow Béibhinn’s story please take the time today to tell one more person about CHD. Knowing your child has a CHD either prior to the child’s birth or when your child is born can help save that child’s life. This can be done when your child is born. Please ask for your child’s SAT’s to be taken before your child leaves the hospital. It is amazing the amount of hospitals that still does not perform this simple two minute non-invasive test. It is basically like a plaster that they wrap around your child’s toe or finger. It will tell them immediately if all is well with your child’s heart or not. CHD effects one in every hundred births. We were that one. Thanks to Béibhinn been diagnosed early intervention insured she was put on the correct medicines to protect her heart from heart failure until she was strong enough for her surgery. Some babies require surgery in the first hours of life. Thank you for reading this difficult post that is a very important and necessary part of Béibhinn’s heart journey. We as a family will continue to raise awareness, continue to fund raise for the Cardiac department in Crumlin and continue to write this blog to bring hope to new families who will follow in our heart footsteps in the future. This is for Béibhinn and all her heart buddy’s young and old and yet to be born and for the brave little warriors who fought their battle and earned their angel wings too soon. CHD Awareness week February 7 -14th 2012.