CCHD Awareness Week
Thanks to Katie Payne, a huge advocate and supporting Fund Raiser for March of Dimes, we were able to get together some families to help with a campaign for Critical congenital heart disease (CCHD) Awareness Week, This week Feb 7th - Feb 14th. Check out the stories of these brave kids below!
Ryland
The Miller family was eagerly awaiting the arrival of their second child on May 17th, 2015. They thought the gender of their baby was going to be the only surprise, but little did they know that baby Miller had a couple of more surprises. Ryland entered the world and it was instantly noticed that he was cyanotic and hypoxic (bluish skin due to inadequate oxygen supply). The neonatologist, Dr. Philip Pan, was immediately called and within seconds of looking over Ryland, he knew that Ryland was born with Trisomy 21 (Down syndrome). Ryland was immediately taken to the NICU for oxygen support at Bellevue Hospital and spent the night there. Early the next day, he was transferred to Albany Medical Center and was later diagnosed with a rare combination of heart defects. He was diagnosed with complete Atrioventricular Septal Defect (AVSD) and Tetralogy of Fallot. The AVSD resulted in no septum (wall) between the left and right sides of his heart (including both top and bottom chambers). This caused inappropriate mixing of the blood in his heart. The other congenital heart defect, Tetralogy of Fallot , included four separate abnormalities. The defects left Ryland with only one (out of four) normally functioning heart valve, in addition to the missing wall in his heart. Ryland's special heart required open heart surgery. He spent about eight weeks in the NICU and then underwent open heart surgery around four and half months old. The hospital and surgical staff were very knowledgeable, skilled, and amazing throughout Ryland's heart surgery. He handled his surgery like a true rockstar! It has been about three and a half months since his surgery, and he is doing very well!
Lucas
At Victoria’s 18 week anatomy ultrasound, after finding out Lucas was a boy, the doctor came in the room and told her that something was wrong with his heart and that she needed to come back in 2 weeks to confirm when the heart was a bit bigger and it would be easier to tell. After being referred to a cardiologist she had a fetal echo done and it was confirmed that Lucas had Hypoplastic Left Heart Syndrome. What that means is that the left side of Lukey's heart was so underdeveloped that it had no functionality and that the right side of the heart was fully functional. This meant he was going to be born with half of a heart. Before 35 years ago or so, these babies were born and would pass away but, they invented three stages of surgery to help make the heart functional with only one side of it working. Lucas was born on June 18th, 2014 and immediately went to the NICU. Mom had a c-section and could not meet him until the following morning. He was 6 days old when he had his first of three surgeries, this one being the most complicated of the three. The first surgery is called the Norwood. He did very well and was released from the hospital at close to a month old. Lucas had his next surgery, the Hemi Fontan, at 5 months old. His last of the three stages, the Fontan, will be around his 2nd Birthday. He has also been through non cardiac related surgeries such as Hypospadias surgery and ear tubes. It is unknown how his heart will do in the future and if he will need any intervention surgeries, a pacemaker or if his heart fails, a heart transplant.
Kirin
Kirin was born full term on May 16th, 2008. She came out with her umbilical cord wrapped around her neck, so she did not cry at first. Once that scary moment was over, she was a healthy baby girl. Being their second child, her parents were surprised how little she cried or needed to be changed. By the evening of her first day, her pediatrician, Dr. Mary Brasch, thought she could hear a heart murmur, but it was very faint and hard to tell. By day two, Dr. Samina Mian and Dr. Phillip Pan both agreed that she did indeed have a murmur that was sounding stronger and that the pulses in her lower extremities were fainter. In the end Kirin spent three days at Bellvue Hospital until she could go to cardiology. At her appointment with Dr. Eric Spooner, it was determined that she had a coarctation of the aorta, a bicuspid aortic valve, an asymmetrical mitral valve, a patent foramen ovale, and a patent ductus arteriosis that had begun to close. Kirin was taken straight to the Albany Medical Center NICU. It was there that she spent three days waiting to have her surgery to repair her coract aorta. During this time it was necessary to reopen her ductus arteriosis as this had begun to close as it should, but now she was losing blood flow to her lower half. To do this they gave her Prostaglandin E1, a treatment developed through a grant from March of Dimes. At six days old she underwent open chest surgery to remove the narrowed portion of her aorta and bring the remaining pieces together. The surgery was a success and more than 7 years later she is a healthy and thriving second grader. She still sees a cardiologist on a regular basis to monitor the remaining defects, but you would never know from looking at her that there was something wrong.
Jaxon
Jaxon is strong and determined, in both body and spirit. A ray of light that inspires, brings joy, laughter and love to the ones he’s around. Watching him you'd never know that he lives with half a functioning heart.
His Parents first learned his diagnosis of Hypoplastic Left Heart Syndrome (HLHS) after abnormalities were found at our 20 week prenatal ultrasound. They will forever remember those moments as their world was changed in ways they never fathomed. Theye have three other healthy children, so having a child with not only a birth defect, but one of the worst forms of congenital heart defects never entered their minds. The news was heart wrenching and terrifying. There were so many questions, fears and difficult choices to make.
In the days, weeks and months that followed they made many preparations to ensure they were in a place that they felt could provide him the best care. Jaxon wouldn't survive without intervention. Jaxon would need to receive a series of three palliative surgeries to sustain life. Every step of the way things aligned and people were there to give a massive show of support. They decided The Children’s Hospital of Philadelphia (CHOP) would give him the best chance. They temporarily relocated our family to the area. Jaxon was born via planned cesarean at 9:08 in the morning of July 12th 2013.
They had a team of exceptional medical professionals that were hugely supportive and loving, not to mention who do their jobs amazingly well. Their compassion and love surrounded them and made a path of unknowns so much easier to walk.
Friends, family and even perfect strangers held out hands and open hearts. They have been brought to tears of gratitude for so many awesome things that they've experienced. The biggest thing they are grateful for is that they have this sweet little boy, Jaxon, who has stolen theirr hearts and made them realize so many things about life. Grateful that despite the severity of his heart defect, having had 2 major reconstructive open heart surgeries in his first four months of life, he has soared through and is thriving, healthy and happy.
Jaxon will have his third planned surgery (the Fontan) this summer (2016).
