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Zander's CHD heart story

Zander's story. Shared by his mom, Nicolene.

I gave birth to a beautiful, healthy, baby boy – or so I thought. When he was just 2 days old, it felt like my world came crashing down. They told me that my child has a CHD. He had a murmur & they requested for the paediatric cardiologist to come & have a look. She came and did a thorough examination & informed me that our baby boy had a VSD (ventricular septal defect). All these words sounded so foreign to me & they explained to me in layman’s terms, that it is a birth defect of the heart in which there is a hole in the wall that separates the two lower chambers of the heart. I thought “am I to blame? I don’t think I can handle this. I am really not that strong.” It was during the lockdown period & only hubby could come visit us once in the evening. It seemed my heart was breaking. We waited for this child for so long. We listened to advice & instructions from the doctors, did our regular check-up visits and the prescribed meds, & with every visit to the doctor, holding our breaths that the hole had grown smaller & that it will eventually close up on its own. But then the cardiologist told us that the wall of the cardiac tissue is mal-aligned & that Zander would need to undergo surgery. Open-heart surgery. It was really difficult to grasp the fact that this little body will have to go through such a huge operation. You get told that this is something rather common & that kids are much more resilient than what we realise, but at that stage it all sounds like blah blah blah, because your mind is running around a million miles an hour to try and figure out, not only how your precious child will survive & get through this, but also how will you survive & get through this, you have to be strong for yourself, your child, your husband, your family. You have to be there for each other, to be each other’s strength, support, shoulder to cry on. Luckily, we are blessed to have such a great support system of friends and family around us.

We just said that we will not give up on him. We will give him any chance no matter what the price. We will learn all that we need to help him thrive. Set our alarm clocks to feed him every few hours day & night, sometimes sit for almost an hour just to get him to actually drink enough milk. You wonder and pray to God for answers, Will our medical aid cover this and will there be enough funds to cover everything needed? Will he gain the needed weight?Will he be able to run around and enjoy life like kids are supposed to? We just pushed on day by day & trusted Jesus to carry us through. Sometimes I will rush to his bed & watch him sleep for a while, bend down & kiss his head & realise how blessed we really are. My mind says savor each moment he’s here, but my heart begs, “PLEASE let him stay!” Eventually, the day came. Zander was 6 months old & we were booked into hospital, at Maboneng Heart and Lung Institute. We were accepted with open arms, very friendly staff who were patient & willing to explain everything to us & answer all our questions. Without them, this would have been much more difficult for me. From pacing the surgical waiting room while Zander was in theatre for almost 6 hrs, to the excitement of visiting him in the CTICU every other day. Once again, this was in lockdown & only one of his parents could visit him once a day for an hour, so we made turns to go inside & visit, the other one would wait around in the waiting rooms & if possible, do a video call. We finally got the thumbs up that we can go home on 14 Sept 2021. It was very stressful as we did not know what to expect with the road to recovery, but it really is true what they said. The journey is hard, but these kids have incredible strength and fight in them. We call them *HEART WARRIORS* for a reason. They will show you true courage & strength, and in turn, they will help you find your own. Zander is now a healthy 2 & a half year old toddler, running around and testing his limits most of the time.

Zander is now a healthy 2 and a half year old toddler, running around and testing his limits most of the times. My heart just melts with every smile. The scar I trace with my finger sometimes, it’s the door to his beautiful heart, let’s me think back to the times we were so worried & stressed and makes me realise that God must have known how much I’d love him, just as He loved him from the start. He had a plan with this journey from the start and we were perfectly chosen to be Zander’s parents. To all other parents going through something similar to this, I just want to say: On those hard days, never forget that God already gave that kid to you because He knew you’d be the parent that kid needed. Just as you are. You are stronger than you think, and you have more people caring & supporting you than you know. NEVER. LOSE. HOPE. I will always embrace the day I became a “Heart Mom” and will always be a heart mom. Zander, I hope that you will always know that no matter what life throws at you, you will never have to face it alone, you have an entire village behind you that will fight with you. I didn’t give you the gift of life, life gave me the gift of you.


 

Pictures shared with permission.



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