Congenital Heart Disease Awareness Week 2014

Hi, I’m Ashley I have been married to my wonderful husband, Ian for 8 years on February 11th. After being married for 2 years we decided to start trying to get pregnant. Little did we know that it would take quite some time to get pregnant. A year and a half later, 2 miscarriages and a diagnosis of Methylenetetrahydrofolate reductase also known of MTHFR, we found out we were expecting. At my 20 week ultrasound we found out that our little one had congenital heart disease (CHD) with an exact diagnosis of Tetralogy of Fallot (TOF) with Pulmonary Atresia (PA). At 38 weeks pregnant I was induced to have our firstborn. He was stubborn he didn’t want to come out and to be honest I was so torn, as much as I wanted to meet our little one and finally find out if we have a little boy or girl I wanted to keep our little one inside forever where I felt like he would be safe from what was to come. Owen came into the world on October 21st, 2009 at 2:38 am weighing 5lbs 6ozs and 18 inches long. 

We got to hold and love on our little guy for about 5 minutes before he was taken away to the cardiac intensive care unit where he would undergo many procedures and tests. We were told to expect for Owen to have open heart surgery at birth. Owen didn’t require any surgeries at birth and came home from the hospital when he was about a week old. Owen did so well. He had frequent appointments with his cardiologist to closely monitor his heart and his weight. When Owen was just over 2 months old the back of his eyes started looking quite yellow to me. I called his pediatrician and they ran blood work. His liver functions and bilirubin levels came back very elevated. He was immediately admitted to the hospital where we found out that he could either have Biliary Atresia (BA) or Alagilles Syndrome (ALGS). Owen underwent a Kasai (liver surgery) in hopes to help his liver drain bile. It is safe to say that Owens Kasai was unsuccessful. 

Owen was placed on the liver transplant list at 6 ½ months old. His health was rapidly degrading and we had no clue and the doctors caring for him really didn’t realize just how sick he was. Owen went into cardiac arrest on his 7 month birthday and came out of it, but sadly only 6 days later on May 27th 2010 after having a PICC line placed Owen went into cardiac arrest again and went to be with Jesus. That had to have been the hardest day of my life to that date. We found out a week before Owen died that Owen in fact had ALGS and not BA and that I was a carrier of ALGS with a 50% chance of any other children being born with this syndrome. 

After losing Owen, Ian and I knew we wanted to have 

more children. We found out we were expecting our second about 4 months after losing Owen. At our 20 week ultrasound we found out again that our second born had CHD with an almost exact heart diagnosis as Owen. Cole came into the world on May 31st, 2011 weighing 6lbs 5 oz and 18 inches long. 

We were warned that they would take Cole away right at birth to the CICU so it came as a shock to me when the Pediatric doctor that would be caring for Cole at birth came in and said “treat this birth as though it is a healthy baby” I cried. They let me hold Cole the second he was born for much longer then we were able to hold Owen. Cole required more procedures and tests then Owen did at birth including a heart catheterization. Cole was released from the hospital when he was about a week old. Cole too had many cardiology appointments and had his first open heart surgery when he was 2 months old. 

It was very stressful as a momma to watch my baby endure so much pain. Cole did very well after his surgery and was released from the hospital just 5 days later. We knew Cole would require multiple open heart surgeries and frequent heart catheterizations throughout his life. Fast forward 4 months Cole had his second heart catheterization that was hopefully going to help stent his Pulmonary arteries so we could wait a bit longer for his next open heart surgery, but his arteries were so tiny that we needed to schedule Cole’s next open heart surgery sooner rather than later. On January 24th, 2012 Cole went into his second open heart surgery and never came out of it. It came as a big shock to us to lose not just one child, but now a second. It’s been a rough life for Ian and I, but God is good He is faithful to bless us with peace and hope in our hearts for a day greater then we could ever imagine when we will be reunited with our precious boys and worshipping our God forever. 

I don’t share our sob story for no reason. My desire is to bring awareness to Congenital Heart Disease (CHD). CHD awareness week is February 7th-14th. Approximately 40,000 babies are born each year in the United States with a CHD. That equates to 1 out of 125 babies born with a heart defect. It is the #1 birth defect yet many are unaware of this condition.

It’s been 2 years since losing Cole and 2 years of hoping and praying for another little baby to fill our hearts and home (not to replace either of our boys.) We underwent IVF with PGD in November 2012 with hopes for a healthy baby, but it was unsuccessful resulting in an ectopic pregnancy and lots of debt. We would love to do IVF again once it is financially possible for us. 

Click HERE for more information on CHD.