I think I can speak for all parents of cardiac kids when I say that our life is filled with a significant amount of anxiety and worry. We all deal with it in different ways and some are better at building their walls than others, but the anxiety is always there.
Doctors told us right from the start of Tyson’s life that there were absolutely no guarantees for his life. His surgeon told us quite frankly that he might do really well after his surgeries and live a relatively good life, but there will always be the possibility that one day we could walk into his bedroom in the morning and find him gone. After three open heart surgeries, five heart cath procedures, and more cardiac tests and procedures than you can shake a stick at, no one can promise me that he will live a long, healthy life. No one can say for sure what his long-term prognosis is. CHDs are a lot like a tornado. You can use satellite to track its course and warn others of impending doom, but ultimately the tornado moves in an erratic path with no rhyme nor reason. It can completely destroy one house while leaving the house next door unscathed. In the same way, one child who the doctors think don’t stand a chance of making it through another surgery can end up kicking CHD in the butt and live a long, prosperous life. The other whom they think is fairly strong from a cardiac perspective drops down dead on the floor one day because her heart just suddenly gives up. It’s true that in life there are no guarantees, but for the lives of thousands of cardiac kids this holds true even more so.
Some days I worry more than others. For Tyson’s whole life, we’ve critiqued and analyzed every little sniffle, every cough, every time he vomits, every day that he appears to have less energy than normal, every time he sleeps more than normal, or says he has a sore chest, or a sore head, or that he feels dizzy, or that his legs hurt. All these things might be normal things that most kids complain about from time to time. But for Tyson, any of these things can be signs and symptoms of congestive heart failure or stroke, brain hemorrhage or blood clot. Being on blood thinners puts him at risk for stroke or bleeding in the brain so we have to closely monitor his INR levels, making sure they are not too low and not too high. Having an AED in the house is not exactly what you’d consider normal, is it? Sending him off to school every day with the chance that the simplest cough could develop into pneumonia and admit him to the hospital – that is worrisome. Having only 18% blood flow going to his left lung, his oxygen levels are low, making him at risk of being hospitalized with what a healthy child would experience as a common cold. And the CVS team at Sick Kids has determined that they’ve done all they can do for his heart and the next step once his heart starts to decline is ‘heart and lung transplant.’
I definitely don’t worry about where Tyson will go when he dies. I have complete confidence in my God and Father, that His promises are true for Tyson and that he’ll have a brand new heart in heaven. That he’ll walk with Jesus with oxygen saturations of 100% and he’ll never need to take another pill or have his sternum sawed open, or get poked with another needle or endure another IV ever again. I definitely know where his home is! But what I worry about most is while Tyson’s heart is made whole, we who are left behind will be left with a huge hole in ours. I worry about the hearts of his older brothers and his sisters, his parents, the hearts of his aunts and uncles, cousins and friends. Would we be able to carry on without him? Would I be able to guide my family through a lifetime of grief and mourning without our Mr. T? I have no control over God’s plan for Tyson’s life. No control over whether or not someday my children may have to mourn the loss of their dear brother and playmate. There’s no bandaid I can put on Tyson’s heart to heal it, no medicine he can take to prevent his death, no magic potion to guarantee he won’t ever be hospitalized again.
So for now, we love him. We snuggle him close and hold him tight, kiss him often and enjoy every single second we’ve been given. Laugh often and hold on to as many memories as we can.
I can’t count the number of times other Heart Moms or Dads have asked me how we came to the decision to have another child after all we’d been through with Tyson. “Weren’t you worried you’d have another child with a heart condition?” “Weren’t you scared how you were going to juggle your heart child at the same time as having another baby?” “How did you decide?”
To be honest, we didn’t ‘decide.’ In reality, the very thought of bringing another baby into the crazy hospital-life we lived terrified me! You can imagine my surprise and fear when I found out we were expecting again when Tyson was not even three years old. Sure, he had completed his three ‘scheduled’ surgeries but his challenges were far from over! He was still hospitalized once or twice a year, and even when he wasn’t in the hospital, he was often sick at home with pneumonia or fighting some kind of virus he had caught; and during the times that he was well we were often hopping from one specialist appointment to the next. Not only that but we were also raising three children older than Tyson, each with their own unique needs and challenges, each needing our love and attention too. How in the world could we give time and attention to another baby at this time in our life?
I’m so thankful that we have an awesome and loving God that knows our needs before we even ask. As much as she may have been ‘unplanned’ in my mind, God knew that our little Addisyn Faith would be balm for this Heart Mama’s soul. She is exactly what this family needed.
I know these blogs posts are typically supposed to be about our heart warriors. But the next part of my post is going to focus on our heart-healthy daughter Addisyn. I write these words to encourage other families with cardiac children that you CAN move on after having a child with a heart condition! You CAN have healthy children after having a child with CHD! Our son’s cardiologist told us that because we already have a child with CHD our chances of having another CHD child would double – but then he quickly added that the chance of anyone having a child with CHD is about 1-2% so that means the risk of having another child with CHD is 2-4%. Recurrence risks vary considerably depending on the type of CHD, so he said the likelihood of us having another child with a right or left ventricular anomaly was highly unlikely. If you have a child with a CHD, the risk of having another child with a CHD is higher than that of someone without an affected child, but it is still quite low. You may in all likelihood have a child with a completely normal heart.
Was it a stressful pregnancy? Of course! There were minor complications that resulted in several added appointments (as if we didn’t have enough appointments already!) because of an antibody issue in my blood. I was referred to an OB at Mt Sinai in Toronto and had several level two anatomy ultrasounds there to ensure that the anti-C was not attacking our baby’s red blood cells. We also had a fetal echo at Sick Kids so that we could be prepared in the event that we were given another baby with CHD. Thankfully the fetal echo revealed that our baby girl had a healthy, four-chamber heart. On top of my regular ultrasounds at Mt Sinai, I also had to have bi-weekly bloodwork to monitor the anti-C titre levels. It actually worked out really well because Tyson also needed bi-weekly bloodwork to monitor his INR levels at the same time. Being only two and a half years old, he was not always able to understand why he needed to be poked all the time so it was super helpful that we could do our bloodwork together – and be brave together. The extra appointments added extra stress and anxiety to our lives resulting in several trips to Toronto every month for the duration of my pregnancy.
Sometimes I worried how it was all going to work out, knowing there was a chance Tyson could need a heart and lung transplant if his heart deteriorated any more, and knowing that he could be hospitalized with pneumonia again at any given time. Sometimes I wondered what God was doing in my life; how could we possibly bring another child into the world with all that our family already had on our plates? I admit, I was exhausted with all the appointments that we had for Tyson and for our unborn baby, and the anxiety level in our house was at an all-time high. Our oldest son, who had taken on so much responsibility being the oldest sibling of a CHD warrior, had also endured so much emotionally that year and he struggled with depression and anxiety that winter too. It’s not something I talk about with a lot of people because I feel 100% responsible for the anxiety that he felt. If only I had handled things better at home, perhaps the anxiety wouldn’t have rubbed off on him.
But let me tell you that the birth of our little Addisyn Faith was so very therapeutic for all of us. In the end she was born healthy and well. A cute little six pound twelve ounce bundle of joy, appropriately named because she certainly did “Add to our Faith.’ We had to throw all caution to the wind and just have faith that God knew what He was doing. And He certainly did know what was best for us – of course, how could I doubt? Addisyn turned out to be the BEST thing that could have happened to our family. She was a very happy baby right from the start, sleeping well though the night and very happy during the day. Tyson was hospitalized with pneumonia again when Addisyn was only four months old, but Tyson was able to stay at our local hospital so it was much easier for Brian and I to take shifts at the hospital. And my Mom was able to take some night shifts too so that Addisyn and I could sleep in our own beds. So it all worked out, as it always does.
At times I feel I was robbed of the joys of Tyson’s infancy because we spent so much time doing things that most new Moms don’t ever think about doing: weighing diapers, measuring fluid intake, learning Ng feeds, Enoxaparin injections, cleaning up the aftermath of reflux problems, weekly trips to Sick Kids, stressing over med times. But giving birth to Addisyn healed me from the trauma of Tyson’s first few years of life and restored some normalcy back to our lives. I took her home, nursed her when she wanted to be nursed and let her sleep when she wanted to sleep. Never once did I weigh her before or after a feed, or poke her tiny legs with a needle, or have to wake her up from her nap because it was time for her medication. I was allowed to snuggle her like a newborn baby needs to be snuggled and she spent many hours curled up at my breast bonding with me exactly where a new baby belongs. She allowed me to put closure to my child-bearing years with good memories instead of traumatic ones.
Today she fills our lives with joy and laughter and keeps me busy at home when Tyson and his siblings are at school all day. Because she and Tyson are four school years apart, she will continue to bless my stay-at-home days for a little while longer yet. I often ask myself what I possibly would have done with my life once Tyson hit school full-time and I had no one else to focus on. What would I possibly have done with all my spare time? Now I spend my days laughing at all Addisyn’s idioms like, “Mom, can you please put tiggy-pails in my hair today?” And the way she can finish the sentences in her favorite books before I even have the words on my tongue. She is so full of spunk and life that I simply can’t imagine my life without her. Even though she wasn’t necessarily ‘planned’ by us, God had a plan in mind for her and for us, and He knew how therapeutic she would be for us.
I want to encourage you, heart Moms and Dads that you can heal after the trauma of having a cardiac baby. You can move on and have another healthy, happy baby. I’m not saying that having another baby will cure your anxiety, but it will absolutely help to dull the upsetting memories that fill your head; the memories that have robbed you from the joys of a healthy baby. In this life of tornadoes, Addisyn Faith was the shelter that I needed to take my mind of the raging tornado for a little while and enjoy the sunshine again. Will I still feel anxiety from time to time? Of course. I’m pretty sure the anxiety will always be there. But Addisyn Faith was balm for this Heart Mama’s soul.