Though neither of my children have been affected by CHD, many SortaCrunchy readers know that I am deeply invested in the story of Gabriella Vega - a beautiful five year old who was born with Myocardial Bridging causing Restrictive Cardiomyopathy. (Read more about Gabriella's story and the response of SC readers here.)
In the past few months, I have had the pleasure of getting to know another "heart mom" - Elayne Slevin. Today, I'm sharing Elayne's story, as well as introducing you to some organizations that seek to support families affected by CHD.
My little heart baby is Noah. Our story began at Noah's twenty week ultrasound when the doctors discovered that he was going to be born with Hypoplastic Left Heart Syndrome, where the left ventricle does not properly form. At this point they gave us our options. They said after Noah was born we could take him home and provide comfort care (which means we would love him until he died within a few days); we could get on a heart transplant list, or we could do the three-stage surgery which would essentially re-route his heart so that it would function out of two chambers instead of four. We chose the three-stage surgery as we felt it was the most proactive route and would give him the best chance of a normal life.
During the next twenty weeks we met with Noah's team of specialists including his cardiologist, who did a couple fetal echo's, and Noah's surgeon who would be performing his surgeries.
At forty weeks, they induced me. At birth, he was doing really well, so I got to hold him for a minute, then they whisked him off to the NICU. I visited him once that night and then didn't see him again until the morning. He was doing well enough to stay at the hospital he was delivered in and didn't need to be transferred to Phoenix Children's the same night. The next morning I insisted they discharge me so that I could ride over to PCH with Noah in the ambulance. That was the only night I left him (they couldn't get a line in and he was screaming and screaming and I had not had a moment of recovery time and was about ready to collapse, so Jay and I did go home that night for me to rest), though I don't think I actually got much sleep.
When we got back the next morning, he was on the vent as he had stopped breathing the previous night when his ductus arteriosis closed. This is something they had given him medication for right after his birth to keep open, knowing that when it closed (as it does in ALL babies) he would stop breathing. At that point he had a few rough nights where the nurses really earned their money. I slept on the bench near his bed every night except for that first one, and woke up every three to four hours to go to the little room down the hall to pump. I think I got to hold him twice before he had his surgery.
On the morning of day five of his life, Noah went in for his first open heart surgery at 8:07. It was gut wrenching watching them wheel him away from me. The surgery lasted about six hours in which we just sat around and prayed and I honestly expected the worst, but finally they came out and let us know he was off bypass and doing great.
After that they had to leave his chest open to make sure swelling went down and everything was normal, but after about three days of that, they went in and closed his chest and he started his recovery. From the day he was born to the day we were able to take him home was three weeks. I will say that I think Noah did so well after that because I was determined to breastfeed him despite all of the nurses telling me he'd never be able to. I pumped constantly until about a week after his surgery the surgeon was actually the one to tell the nurses to let me try nursing him. If he didn't gain weight after a few weeks THEN we'd consider supplementing. . . but Noah never got anything except for breastmilk and despite his rocky start, he learned to nurse like a champ and we had a 2 1/2 year nursing relationship.
So, we took him home and settled in to life, with me freaking out all the time because I was sure he was going to stop breathing any moment, but we managed to get through the next couple months until it was time to take him in for his second open-heart surgery at about four months old. Handing him over the second time was one thousand times harder because I had a chance to get to know this baby. . . and I had to physically hand him to the nurse. I remember not wanting to let go, but wanting to snuggle into Noah forever. The only way I was able to hand him over was to remind myself that he would die without these surgeries.
This surgery went well and was about five hours long. His recovery was only about a week. I requested a big bed and co-slept with him every night despite the chest tubes and machines.
After that, life really got to be normal and for the next couple years we had cardiology visits about every three months until we started talking about his final surgery - the Fontan! This was the surgery that would complete the job to where Noah would basically function with two chambers instead of four. It would restore his O2 sats from 75% to up to the mid to upper 90s! Noah completed this surgery in October of 2008, the surgery taking another six hours. This one was even harder than the other two, because this was a little person now. This was Noah! We got special permission from the staff to gown up and go back into the operating room until Noah was fully under anesthesia so that he wouldn't be scared. He did so good, and was able to wake up and come off the vent the same day! Again, he was only in the hospital for 1 week before he got to go home.
He is now an entirely normal 4 year old boy, with half a beautiful heart. You'd never know what he's been through unless you saw the gorgeous scar down the middle of his chest. God-willing he will be with us for many, many years. At the time he had his surgeries, they'd been doing the Fontan for a bit over 20 years and a lot of the pioneers are still alive, so since in the past 25 years they've improved, I'm hoping that Noah will get a chance to live a long and healthy life. I know I still freak out every time he gets sick, and I'm aware that he likely has a shorter life expectancy than a "normal" kid, but I told myself when we chose to do the 3-stage surgery, that I was just going to cherish the time that God did give me with him, and be thankful for every moment Noah is on earth with me.
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While in Phoenix, Elayne joined with fellow heart mom Kym Vierthaler to start a chapter of Mended Little Hearts. She told me:
I wanted for MLH of Phoenix to reach out to help as many families as possible as they traveled through their heart journey. I was DEVASTATED when I found out about Noah's heart. Before he was born, Noah's cardiologist gave me the name of a mother whose son was born one year before Noah, and had been through his first two open-heart surgeries. Meeting with Bryson and his mom Kierra gave me hope! Hope that not only did my son have a chance at life, but a chance at a normal life. The rest of my pregnancy was such a whirlwind of research and prayer, but once Noah had recovered from his first two surgeries, I remembered how pivotal it was to me to meet another heart mom and how that was something that I wanted to do as a ministry - to reach out to as many people as possible going through the same thing as we did, and let them know that they are not alone.
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This is the website for the Phoenix chapter of Mended Little Hearts, and there are chapters across the nation. Click on the "Mended Little Hearts groups near you" link on the MLH home page to find chapters nationwide.
Another group supporting and advocating for heart families is Saving Little Hearts. Founder Karin Coulter and other organization members provide emotional support and education for heart families primarily through the distribution of Surgery Care Packages.
More resources, articles, and support can be found at the Official CHD Awareness Week 2010 Facebook Fan Page. Additionally, you can search the #CHD hashtag on Twitter to connect with other CHD Awareness advocates.
Congential heart defects and disease remain the leading cause of birth-defect related deaths across the globe. If you don't know someone in your own family affected by CHD, chances are someone in your friend group or community will be. I hope that sharing these resources will have a positive impact today. Let's continue to promote awareness for CHD and provide emotional, spiritual, and physical support for those families tending to those little hearts!