For the past couple of years, organizations throughout the US have stepped up to recognize the days from February 7 through February 14 as CHD Awareness Week. Of course, it's only appropriate that the "festivities" culminate on Heart Day. I have posted these statistics before, but I think they are really telling:
- Congenital heart defects are the most common birth defect. 1 out of about 125 babies are born with a CHD. (To put that in perspective, 1 in every 800 - 1000 babies is born with Downs Syndrome)
- Congenital heart defects are the number one cause of death from birth defects during the first year of life.
- Nearly twice as many children die from congenital heart disease in the United States each year as die from all forms of childhood cancers combined.
These statistics are very interesting to me! I must say that before Ian's diagnosis in utero at 20 weeks, I couldn't even spell "CHD". I was so naive - I had left several other previous OB appointments where we heard 2 heartbeats. I had no idea that one of those heart beats was coming from a very delicate heart!
I don't want to bore you with a repeat of our story, but there are some that are just reading our blog and I think it only fair to give them a glimmer of hope. We found out at 6 weeks gestation that I was pregnant with twins. With that information, my OB recommended that I see a maternal fetal specialist "to be on the safe side". My OB had twins so I took it on "her authority" (because at that point, I was clueless about everything related to even being pregnant) to make an appointment with the specialist. At the standard 20-week ultrasound, it became very clear after just a few minutes of the ultrasound tech's poking and prodding that something wasn't quite right ... however, I was so naive, I could not have even fathomed what we would learn that day. As most who are about to get really bad news regarding their baby, we were quickly moved from the ultrasound room to an exam room and told "Just wait here; the doctor will be in shortly to go over what we saw!" Well, in walked the Doctor - with 2 pieces of paper in his hand: 1) a drawing of the perfect human heart and 2) a drawing of Ian's heart, with the initial diagnosis of Truncous Arteriosis. Trunk what? Oh my goodness, what a day! I was totally numb, overwhelmed, mystified, scared, retreating, crying ... basically, you name every "hard to describe emotion" and that was me at that point. The doctor was quick to point out, however, that this was just his best guess and that it would be imperative to see a pediatric cardiologist so he could take a look and confirm the diagnosis. A few days later, we met with our awesome pediatric cardiologist and he confirmed that it was indeed Truncous Arteriosis. The outlook was pretty grim. Basically with Truncous, there is no pulmonary artery at all and the repair includes building one from synthetic materials and attaching it to the existing anatomy. Quality of life was a question, but not the main one ... sustained life at all was the main question! Oh my goodness; again, I was totally overwhelmed and had no idea what to do, where to go, who to talk to ... and to be honest, I retreated. I didn't want to talk to anyone at all. I needed serious space to process it! It took me a few days, maybe even a week or so, to really get my feet settled and change the attitude from my "doom and gloom" to "what are the options?" I remember very specifically coming home from a follow-up appointment with the cardiologist at some point, walking downstairs to my basement, and collapsing onto the floor wailing! I cried out to God like I have never done before (until then, I had never really needed to) ... I knew in my heart that there was absolutely NOTHING I could do to "fix" the situation! I remember praying outloud, "OK, Lord, here we are. I can't eat right to make this go away, I can't sleep more to make this go away, there is nothing I can do Lord ... nothing except to pray and ask that you carry me!" And, immediately it was like the weight of the world was lifted! I was relieved and felt like I could tackle the future - whatever that might be - because I knew God was with me!
A few weeks later, we visited MUSC for more or less a 2nd opinion and to meet with the surgeon that would do Ian's surgery, if we decided to deliver in Charleston. What a whirlwind trip that was ... but, oh my goodness, God was so good. It was like He was there from the moment we got out of the car in Charleston the night before "introducing us to His friends" ... people's comments were all about MUSC - even those people that had no idea why we were visiting Charleston! It was weird, ironic, or simply God at His finest pointing us in the right direction every step - carrying me through the fog! And, lo and behold, when the ultrasound tech at MUSC saw Ian's heart, she said, "This isn't Truncous Arteriosis; there's a pulmonary artery right there. He has Tetralogy of Fallot." Well, that meant nothing to me but I could see the excitement in her face! Now, we wouldn't be talking about "sustained life" but "quality of life". The outlook was good for Ian; but, then the words that haunt so many CHD families came - "No pressure, but you need to keep him 'baking' for as long as you can! He needs to be 'fat and happy' when he's born in case we need to do surgery within a few days of his birth!" And with that mandate, the feeding issues began ... he wasn't even born yet, but with most heart babies, feeding and gaining weight are the most important aspects early on! I felt empowered, though, because I can eat and now I had an excuse :-)
After 2 weeks in the hospital for pre-term labor and 8 weeks on bedrest, the twins were delivered at full-term on July 22, 2008, via c-section at MUSC in Charleston, SC. Bonner weighed 7 lbs 11 oz; Ian, a healthy 6 lbs 12 oz. I had done all that I could do; now we just had to wait and see how Ian's little heart would respond to "the elements". In the beginning, things were good for him; his skin was dusky but you didn't dare mention it - it was like the giant elephant in the room.
We had been given all indications that he would come home before he needed any surgery and that's the hope we had. Unfortunately, his little anatomy just couldn't do it so he went to the OR at 9 days old to have a BT-shunt put into place.
We were in the hospital - with plenty of ups and downs and, of course, feeding issues - for the next 3 weeks. It was so hard with two babies in a city where we didn't know too many people. My daughter was a trooper though and never complained when I would hand her over to a complete stranger in the PCICU waiting room to be fed so Stewart & I could grab "just 5 minutes" together with our son... Oh my goodness; those were some long days! Home we came, though; and, of course, the mantra of "eat and grow" was at the forefront of our minds; we knew that Ian would be going back to the OR very soon for the full repair of his little broken heart.
2 years this Sunday, February 13, we handed Ian over to his cardio-thoracic surgeon for a second time at 7 months of age so that his heart could be repaired.
And, for the most part, it is "fixed"! He lives without a pulmonary valve and that will eventually need to be addressed. For now, we are so fortunate to visit our extraordinary pediatric cardiologist on a yearly basis! We know that it will not always be like that; there will be a point in the future when we hand him over for a third time ... but we certainly know that God is in control and that He formed Ian's heart just how it should be so that through our journey, we can try to bring glory to Him in all that we do!
Ian and Bonner wore their CHD t-shirts to school today in honor of CHD Awareness week. Bonner's pink shirt says, "I LOVE SPECIAL HEARTS!" and Ian's has CHD SURVIVOR on the front! (If you ask me, it should really say "OUR HERO" as he has endured more in his first 2 years of life than most of us will in a lifetime!)
They are pointing to the heart on their shirts :-) I love that they are holding hands!!
I repeat our story so often to give those around us hope and to show God's goodness does shine through! We would not have picked this journey for ourselves at the time; but, I can guarantee that we wouldn't change any of it for the world! Give your children extra hugs this week and if you know other CHD survivors or angels, remember them not just this week, but always, in your prayers... their families can certainly use your lifting them up to Him each and every day!
Love,
Jennifer
