((WARNING: The following post contains graphic images. Continue at your own discretion.))
Four years and two days ago, our lives were forever changed when our unborn son was diagnosed with a complex congenital heart defect (CHD) called Hypoplastic Left Heart Syndrome, or HLHS. As you might imagine, we never expected it and certainly didn't know the first thing about it, yet we were immediately and unwillingly thrown into a world of chaos and confusion unlike anything we'd ever experienced in our lives. In fact, it took me six days just to put the words together to share the diagnosis on my blog. I can relive the day of June 16, 2009 in my mind like it happened yesterday.
Here's the post I wrote that chronicled that dark, devastating day in our lives.
Chase was born on October 26, 2009. He underwent his first open-heart surgery at a mere 7 days of age on Monday, November 2, 2009. They took him back at 6:33 AM and it would be over 8 hours later, at 2:55 PM, before he was out of surgery. We were able to see him for about 5 minutes after he was settled into the Pediatric Cardiac Intensive Care Unit (PCICU) at MUSC Children's Hospital in Charleston, SC.
Monday, June 22, 2009The Diagnosis
This is the hardest blog post I've ever had to write. It's been almost a week that hubs and I have been reeling with the information that was provided to us, and I'm writing about it here in a genuine and sincere attempt to ask for your prayers as we head into the difficult journey that lies ahead.
On Monday, June 15th, hubs, LO and I headed to my 20-week ultrasound appointment with the anticipation of seeing images of our little boy. The ultrasound seemed relatively normal, measuring this and that, listening to the heartbeat, watching our son squirm around in his safe little home.
We waited what seemed like forever for the doctor to come in for the quick "any questions?" discussion, where we would say no, we're good to go.
Unfortunately, the doctor said something to us about not having very clear images of the baby's heart, and that she wanted us to visit a specialist who had more advanced equipment that could capture the pictures of the heart that were needed. She told us not to worry, that 9 times out of 10 it's nothing, don't be concerned, etc.
Miraculously I was able to heed her advice and not worry about the appointment that had been scheduled for us on Thursday, a good 3 days later. I was surprised to get a call not long after we left the 20-week appointment to tell us there was availability for us to come Tuesday, the very next day, for the appointment with the specialist. We jumped on it, just so we could hurry up and get our peace of mind back.
On Tuesday, June 16th, hubs and I left LO with Mona and met at the specialist's office for our ultrasound appointment. We were taken back and the technician started the ultrasound. She did some of the same measurements they had done the day before, and I patiently waited for her to give us an "all clear."
To my utter shock and horror, I vividly remember her muttering the phrase "I won't pretend that every is okay..." as she was trying to coerce the baby to move into the right positions so she could get a look at exactly what was going on. She left the room and brought the specialist, Dr. Greig, back in with her, and had him continue with the ultrasound. He was focusing on our son's heart, although all we could see was the black and white image surrounded with red and blue blotches that apparently indicated blood flow.
The doctor then dropped a completely unexpected bomb on us which we were not prepared to handle. He told us that it appeared our son had Hypoplastic Left Heart Syndrome (HLHS) and a Ventricular Septal Defect (VSD). We were in utter disbelief. We had never heard of either of these conditions and immediately wanted to know what the impact would be for our unborn son.
We left the ultrasound room and waited for the specialist in a tiny little room where he would come in and explain a bit more about these conditions. It felt like an eternity in that little room, our minds racing and buzzing with all of the "what ifs" and "how did this happen" etc.
The doctor finally came in and explained to us that HLHS is one of the most complex and rare congenital heart conditions in which the left side of the heart is critically underdeveloped. With HLHS, the left side of the heart can't effectively pump blood to the body, so the right side of the heart must pump blood both to the lungs and to the rest of the body. Without treatment, hypoplastic left heart syndrome is FATAL, usually within the first few days of life.
The doctor attempted to provide 4 options to us, the first of which was termination of the pregnancy. I wouldn't even let him get the words out of his mouth before interrupting to tell him that wasn't an option. The next option was called "comfort care" where the baby is born and you do basically nothing but hold and love him until he passes, within the first few days of his life. Again, NOT an option. The third option was a heart transplant, in which case it would be very unlikely to find a new heart for our son within the first few days of his life. The final option was the ONLY option for us. It involves a three-step surgical procedure designed to create normal blood flow in and out of the heart, allowing the body to receive the oxygen-rich blood it needs. It is by no means a permanent "fix" to the problem, but rather a way to surgically reconstruct the heart to make it more likely to perform the functions of a regular heart.
As you might imagine, we were completely devastated at the diagnosis, and for the next 24-48 hours, we were totally numb as we both attempted to digest the information and wrap our minds around what was in store for us. We felt totally deflated, and the joy and anticipation of the pregnancy and of expecting a new baby were completely lost.
We struggled through the first week, telling only immediate family and a few close friends about our situation. It was a very difficult and trying time, most of which I spent researching HLHS on the Internet, finding both uplifting, positive information as well as deflating, disappointing, heart wrenching information.
So finally today arrives, Monday, June 22nd. We had our appointment with a Pediatric Cardiologist, Dr. Horne. While we weren't expecting the diagnosis to change, we were hopeful that he wouldn't find any additional problems with the baby or his heart. Dr. Horne did confirm the diagnosis of HLHS and confirmed the baby would need the 3 surgeries in order to live.
While we are still reeling with the information and are devastated to learn that our baby has a serious and rare heart defect, we are trusting in God for His hand of healing and protection on our son. We know He is able to do more than we could ever ask or imagine, and will continue to trust in Him throughout this journey.
Thank you in advance for your thoughts and prayers as we face an uncertain future. I will update the blog as often as possible/necessary throughout this process. I don't have another appointment scheduled until July 15th, so there hopefully won't be much of anything to share about the baby and his heart problem, but I will also continue to post about the fun and random things that happen to us and our precious LO. Can you believe she'll be TWO in just over a month? I'll be working on party details soon, so you can look forward to hearing more about that, too!
Thanks again for your thoughts and prayers!!!
This is our 1-week-old son following his first surgery. The nurses were kind enough to cover him with a blanket so I couldn't see his open chest and beating heart. It would be three days before the surgeon would close his chest as they needed to allow for the swelling that takes place following this surgery.
He had his share of bumps in the road, which included chest compressions when he crashed coming out of a bronchoscopy procedure, as well as vocal cord paresis and other hurdles before we were discharged when Chase was 5 weeks old. We returned home to learn how to live in our "new normal" world.
Just over 3 months later, we found ourselves back at MUSC for Chase's second scheduled heart surgery. On Wednesday, March 3, 2010 at 5:45 AM, we handed our son over yet again to the amazingly talented cardiac team at MUSC Children's Hospital. At 3:08 PM, just over 9 hours later, Chase was out of surgery and getting settled into the PCICU.
Here he is following his second heart surgery:
I can't help but find myself in tears as I relive these days/weeks in my family's lives. Seeing my son connected to medical devices and the numerous medications that were sustaining his life is hard no matter how long ago we experienced it. I can put myself back into that PCICU, sitting at his bedside, listening to the beeping of his pumps and monitors as if it all happened yesterday. Such a scary time not knowing what the future held for my little boy.
Fast-forward four years later. We got that diagnosis and by the grace of God, we were able to get through the uncertainties that lay ahead. We got through two heart surgeries and have one amazing little boy -- our living, breathing miracle from God -- that reminds us every day just how faithful our God is. It is only by His grace that I can share these:
An almost 4-year-old boy who loves the water and is so proud of himself for jumping in from the side and going underwater just like his big sister!
That same boy who received his first "big boy" bike and has asked every day since to go outside and ride it.
A boy who LOVES him some trains (like the one he's "driving" below), Buzz Lightyear, Super Mario Bros. Wii, BREAD, and every puzzle he can get his hands on -- no matter how big or small!
A big kid who had his very first sleepover at his grandma's house (along with big sister LO) just two short weeks ago, without any concern of being away from mommy & daddy overnight for the first time ever.
Four years and two days ago we experienced the beginning of something that no parent should ever have to face. And yet, here we are today, with an unbelievable blessing in our lives who brings us more joy than I could express. We wouldn't be where we are if it weren't for the grace of God and the love, support and prayers of our family and friends (and blog readers!). We love our sweet boy and it is my prayer that he will continue to bless us for another 80 years!!!
NOTE: His third and final scheduled heart surgery will most likely take place next spring. Please begin praying even now for a successful surgery with no complications for our sweet little Rock Star Chase.
What a beautiful post sharing your heart journey with Chase. There is so much to celebrate! I am grateful he is doing so well and thriving! Such a tremendous blessing!ReplyDelete
I know you gve warning but I was still unprepared to be this moved. I well remember these days but you might be interested to know I remember most how inspired (practically awestruck) we all were to see so much of God in you and on everything you did and said throughout. Yes, all of it. I am still amazed, and am equally inspired by Chase himself and those memories.ReplyDelete