Super Jack of Hearts
We just had our Jack and celebrated the Holidays as a new family of four: Dad, Mom, Charlotte and Jack. Everyone was happy, healthy and a little sleep deprived. About 2 weeks prior, our doctor heard a heart murmur and told us to follow up with Cardiology. We didn't think much of it, as it was most likely "innocent"- I had one as a child. I took Jack to the appointment, a talkative new mom- sat through the echocardiogram, EKGs, the doctor evaluated Jack, and then it happened.
On Thursday. January 10, 2019, our World as we knew it shattered.
"You need to take Jack to Children's Hospital.... would you like an ambulance?" Dr. West explained Jack's heart was complex and his little body was fighting so hard. He had multiple ASDs and VSDs (holes in heart), as well as Hypoplastic Aortic Arch, Hypoplastic Aortic Valve, and Coarctation of the Aorta. He has a version of Shone's Complex. I remember calling my husband and when he answered had to tell him to pull over and then the doctor told him what was going on and to meet me at the hospital. I didn't take that ambulance- instead my mom met me and drove us there. We had just finished celebrating his birth and the holidays- now I was calling to tell our family and friends that our 3 week old little boy was in Heart Failure and going to need Open Heart Surgery. We were all in shock on the outside Jack looked like a very happy content baby.
The goal was to get Jack to Monday and let his body rest before surgery. We watched as they did a blood transfusion, added PICC lines, pushed medications, and increased oxygen. By that Sunday we had seen the outward signs of how sick he was: retractive breathing, blue/grey tones, tired.
On that Monday, January 14th our team of Surgeons, Doctors, Nurses and Staff led by Dr. Castro and Dr. Veigas would help Jack get his Super Powers. In the words of our then 2 year old daughter "Jack Jack got his heartbeat back". They would close a few of the holes and expand his arch. They were amazing and are amazing. The size of his heart was the size of a Walnut and their magic hands were able to fix that- their brilliance, the science behind what they were doing I am forever grateful for. We would spend 15 days between the CICU and various other floors with a few setbacks along the way before we would come home.
How did this happen? I had a super easy pregnancy, we didn't have a family history of Congenital Heart Defects/Disease, I don't have diabetes, and nothing was evident on my anatomy ultrasound. In fact, we had top doctors look at it after to see if they could see his complex heart on the Ultrasound (and they knew what they were looking for)- they couldn't.
That's the thing with CHDs- the exact cause of CHDs are unknown. Yet, It is the most common birth defect impacting 1% of Babies. Each year in the USA approximately 40,000 babies are born with one. 25% of children born with one will need heart surgery of other interventions to survive
Unfortunately, there is not a cure for CHDs- and Jack will be followed throughout his life and treated as necessary. We are extremely grateful for the doctors' who provide his care. We have been lucky to have Jack medicine free for 2 years and able to be a silly and wild little boy. Today, more infants with CHDs survive to adulthood because of advancements made through research. Because of advancements made through research, death rates from CHDs in the U.S. have declined by 37.5% since 1999.
We are extremely thankful for the Miracle we had thanks to the research and dedication to CHDs and Heart procedures. Please join us in walking to support all Heart Warriors and help to make sure that all babies have the ability to show their Super Powers and be silly beach loving kids like our Jack.
Facts (Provided from Children's Heart Foundation Site)
What is the health impact of congenital heart defects?
- CHDs are the most common cause of infant death due to birth defects. (Source: CHPHC)
- An approximate 100-200 deaths are due to unrecognized heart disease in newborns each year. These numbers exclude those dying before diagnosis. (Source: CHPHC)
- Approximately 25% of children born with a CHD will need heart surgery or other interventions to survive. (Source: CHPHC)
What has CHF done to help the CHD community?
- The Children’s Heart Foundation is the leading national organization that was created to exclusively fund congenital heart defect research.
- The Children’s Heart Foundation has funded over $10.6 million to basic science, translational and clinical CHD research projects at leading research centers across the US, Canada and Europe.
- CHF has published and distributed 35,000 English and 3,000 Spanish copies of It’s My Heart, a patient and parent resource book.
- CHF has Chapters, events and volunteers in many US states supporting the CHF mission locally.
- Today, more infants with CHDs survive to adulthood because of advancements made through research.
- Because of advancements made through research, death rates from CHDs in the U.S. have declined by 37.5% since 1999.
- Despite the progress made in understanding and treating CHDs, more work is needed to determine the cause and best treatment options.
- Congenital heart defects are common and can be deadly, yet CHD research is grossly under-funded relative to the prevalence of the disease.
- The NHLBI has stated that Congenital Heart Defects are a serious and underappreciated global health problem.
Raising funds for congenital heart defect (CHD) research is not only critically important to all babies born with, and children and adults living with CHDs, it is also personally meaningful to me.
By donating to help me reach my fundraising goal, you’re helping to fund the most promising research into CHDs - America’s most common birth defect.
Together we can make a life-saving difference! Thank you in advance for your support.