The month of celebrating love and presidents and Black History and shadows and, this year, the Olympics. It’s all written on my calendar or in newsstands. BUT, that’s not all! I learned of another awareness during February: CHD (Congenital Heart Defects).
Back quite a few years ago now, I was walking through Pelfrey Hall and by way of who-knows-exactly-what-now met this lovely lady named Dana. (If I remember correctly) she had recently returned from a couple years in the Ukraine. The Ukraine! That place I went my Junior year of high school? That place that made me cry out in surrender to do whatever He wanted me to do? That place that took me to several ports off the Black Sea to pass out Bibles and smile at people as I said the only two phrases I sort of knew in Ukrainian? Yes, that Ukraine! So, naturally, Dana intrigued me:) Alas, I wasn’t around the college campus too often then (being married and either pregnant or having a baby already…or both;)), so our times together were brief and few. Nevertheless, Dana’s sweet spirit always made me smile, as beauty often does.
Back up just a few years ago and you have the world of Facebook. For all of social media’s many faults, I have found that it can also be used in sweet, wonderful, godly ways! One of which has been connections with ladies I probably never would have had relationships with this side of eternity. One of these connections has been with Dana. We’ve chatted motherhood mostly; though, every now and then we throw out wistful dreams of walking in the rain together in London (where her, her husband, and her little girl currently reside).
Back to the present. If you were to visit Dana’s FB page, you would notice quite a lot of posts on one topic – CHD (Congenital Heart Defects). You would notice some articles on celebrities that have it; even an Olympian that has it. Today you would see the picture of a little boy holding a paper heart; a little boy who is waiting for a real heart. And if you scroll down just a bit, you would see pictures of Dana’s beautiful daughter, Amalee. Amalee has CHD – specifically Tetralogy of Fallot. Amalee will be three in May; by that time she will have undergone 5 heart procedures.
I will be posting her story at the bottom of this post, but I wanted to explain why I’m even posting at all. As I was buying construction paper and suckers to make Valentines for my kids to take to school, I was desiring to do more than make paper hearts. I had recently read about a couple who, when both of their boys were born, had asked others to donate to specific causes in honor of their new lives. I loved that! (And sooo wished I could back up 10 years to do the same thing with Christopher! Hmmm…it’s never too late, though!) This got me thinking on what we as a family could do during “heart” season (a.k.a. Valentine’s season) with eternal value. So, God taking my little thought, gave me a face and a friend to contact. I had come with just a little question:
“Dana, quick question: was wondering…if we wanted to make a gift-donation to a “Heart” organization or to a specific family, what’s a good way to do that? Do you know of any specifically?”
Well, that little question has bloomed into almost a week’s worth of ideas, connections, and exciting possibilities! We are only at the beginning stages, but I am so excited!
Here’s where I’m at with this:
~Today I am praying for a six week old baby girl (with CHD) who is having a scan on her heart.
~I am waiting on opportunities (specifically two) to get in touch with two ladies with children with CHD.
~I am anticipating purchasing a LOT of frogs (stuffed animals) pretty soon! (More on that soon:)!)
~I am praying for God’s heart in this; specifically for His timing, His connections, His Word, His leading, His passion, and His provision.
~I am praying that we (not just I), as the Stephan family, will really get excited about this!
~All in all, I’m praying and waiting…eagerly!
I don’t know all God has in store with this; in fact, I don’t know what’s in store for this afternoon. Nevertheless, I am all ears! I’M LISTENING LORD! Will you begin this journey with me by reading Amalee’s story below?
Love you Friends!
Amalee’s heart journey thus far…
As it is heart week, I have been asked to share Amalee’s story. This note doesn’t really give many specifics of Amalee’s particular cardiac condition (the medical terminology and general facts associated with TOF). If you are interested in learning more about this, just let me know. I am always happy to try to explain more for those interested.
This note does, however, tell a bit about her personal heart journey thus far…
On 27 May 2011, when Amalee Hope was just 5 days old, we found out that she had been born with a condition called “Tetralogy of Fallot”, which left her with at least 4 serious heart defects. My pregnancy had been so healthy. This was not something that ran in our families. It was a complete shock to all of us. Congenital Heart Defects really can happen to anyone, but there is always hope. After praying early in my prenancy, I felt compelled to give our baby the name “Hope” long before she was ever diagnosed with any health problems. I hold to that, and it has encouraged me more than I can express.
She was such a happy and content baby generally, despite regular bouts of cyanosis (a bluish skin colour) many times a day, especially after having her milk, crying, or exerting herself in any way. She had a few other symptoms too… a bit sleepy and sweating easily with feeds. In addition to these things, between the ages of 2 weeks old and 11 weeks old, she suffered at least 12 painful and scary hypoxic tet spells that continued to increase in both frequency and severity. When she would have these spells, she would begin screaming suddenly and inconsolably (like a bee had stung her?), go rigid and very deep blue/purple in her lips, face, extremities, and sometimes her legs too. She would also have very laboured breathing throughout the spell. Then, as suddenly as she started, she would often go quiet and pass out from exhaustion – pale and limp. She would never completely stop breathing but the oxygen levels in her blood would drop dangerously low during these spells. Once a spell was over, her colour would normally return within a few minutes of her passing out as her oxygen levels would normalise on their own.
Sadly, we found these spells didn’t seem to be responding to any medication, at least not in Amalee’s case. One Sunday afternoon (31 July 2011), when she was exactly 10 weeks old, she experienced a particularly scary spell where she went very blue from head to toe (more coverage than we had ever seen) and her colour did not appear to be returning. We rushed her to our local hospital where it took a couple hours on oxygen before she started looking pink again. She was then admitted into hospital and later transferred to her specialist cardiac hospital where she ended up in emergency heart surgery (8 Aug 2011) at 11 weeks old to receive a BT shunt. Her last hypoxic tet spell happened on the operating table. No more dangerous hypoxic spells ever happened again after she received her much needed BT shunt. As awful as surgery and recovery were, it was all successful, and our sweet baby was finally pink – for a while.
When she was a bit older and stronger, at 17 months old, she underwent another, more extensive open heart surgery to attempt actual repair of the defects in her little heart (30 Oct 2012). By that point, though, she was very breathless, easily exhausted, and was starting to go blue in colour again, clearly outgrowing her shunt. As horrific and traumatising for her as it was, thankfully she came through her second major heart surgery and recovery smoothly and went from strength to strength. We couldn’t get over how beautiful her new, pink colour was, and the amount of energy she had after just a few months of recovery was unreal. Even Amalee seemed amazed and danced until she could dance no more as soon as she was able. Finally, she was getting to play without the physical restrictions that had once bound her and had often left her breathless, blue, squatting, and frustrated in the past. We were told she was doing brilliantly and not to expect another heart surgery for a very long time. Finally, we thought, we could breathe a bit… Now that these surgeries were behind us, we were finally safe to look forward without that hanging over us (at least for 10-20 years or so, as the professionals were predicting).
She is now nearly 33 months old. In addition to 2 open heart surgeries, she has also endured 2 cardiac catheterization procedures in her young life (the first at 11 months old and the second at 29 months old), the last of which was just this past autumn 2013. That procedure, in Oct 2013, was to try to aid complications that have developed since her last big surgery; however, it was unsuccessful. We were told these sort of complications can happen sometimes post heart surgery and that it is now obvious that Amalee is part of the 2-3% of children in her situation that can only be helped through re-operation. That was such shocking news for all us to try to take in. We are still in shock, but we’re now bracing ourselves and trying to muster the strength and courage again for yet another major open heart surgery (her third) expected to happen in the spring of this year (2014), just before she turns 3 years old.
In the meantime, Amalee appears to be doing very well. She is such a joy to be around. She has an infectious laugh. She loves Mickey and Minnie Mouse, drawing and colouring, dressing up like a princess, having pretend tea parties, and dancing – dancing all the time! She doesn’t appear poorly again yet, but the surgeons and cardiologists have told us that extensive tests reveal that it is only a matter of time before she is very unwell again. Not acting would eventually lead to ride-sided heart failure… eventually. Amalee is very closely monitored; so, I really don’t think it would ever get that far. However, because of this, her next open heart surgery is meant to happen very soon whilst she is still relatively strong and has the best fighting chance and hope for a smooth recovery. The surgeon is confident that he can help her. He is optimistic and hoping for the best (that no more intervention is needed for a while after this next major operation), but he has told us that he honestly cannot predict what her childhood might look like with regards to more surgeries and procedures.
It is definitely an ongoing journey. With CHD, you never really know what to expect with regards to how the road will bend. However, we continue to trust God with our little one and hold on to hope that she will live a full and amazing life. We are also incredibly thankful for all the medical staff, surgeons, and consultants as well as the family, friends, other heart families we have met along the way, and even complete strangers who have prayed with and for us and who have walked with us this journey with kindness and support. There is no way we could ever express how grateful we are for these treasured blessings.
Amalee continues to delight us daily with her beautiful, sweet, funny personality. We couldn’t be prouder nor more inspired by her strength, bravery, and resilience. What a precious gift she is. Happy Heart Week to our Amalee, Princess of Hope and to all those brave children and adults out there fighting CHD daily, with every heartbeat.
**It might be good for me to add that not every child born with a Tetralogy of Fallot will spell like Amalee did. This has just been our personal experience. Every child is different. Some children show very few signs whilst others are very symptomatic. Many children with TOF only need one heart operation as a child plus later surgeries as an adult. Others might be slightly more complicated and require a lot more intervention throughout childhood.
It really is good to know the signs associated with CHD and to always be aware.
“It’s what we’d told our ragamuffin kids when they were little: “Your Dad will call you– and if you can’t hear him?You’re not where you are meant to be…
Stay close enough to the Word to hear your Father’s voice. Do Whatever He Tells You.
Do whatever’s the next thing. Do whatever He puts in front of you and do it with great love and this is what makes any day, any life, anybody great. Miracles keep happening in the mundane.”