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"One day at a time"

My husband and I were struggling to conceive and fell pregnant with our first miracle daughter, Elandri, with the help of a fertility clinic. We were told should we at all plan to have more than one child, we should not wait too long before having another. Our doctor was concerned that the fertility treatment wouldn’t be as effective the longer we wait.

We decided that we wanted Elandri to grow up with a sibling and after two months of fertility treatment, we fell pregnant with Mikhe. We specifically chose this spelling so that her name would have a special meaning. The name Michael means who is there like God? and we decided this is what her name would mean too.

Mikhe was born with a murmur on her heart and was immediately sent for a heart sonar. The sonar came back as normal, however, the paediatrician continued to express concern. It was decided that a deeper investigation of the murmur would be done at her 6-week check-up. We brushed it off and prayed that the murmur would be gone by the time 6 weeks came around.

I wished someone would have informed us on symptoms to watch out for, should there be a heart condition. Looking back, there were signs, but we didn’t understand them.

  • Mikhe breastfed for about 10 minutes at a time, but she gained weight and I just ssumed that because she is my second child, milk flowed easier

  • We would often say, she’s crying herself into a sweat!

  • Her feet were cold, even on hot days

  • Mikhe slept a lot - day and night

At our 6-week check-up, that took place after 7 weeks due to December holidays, the doctor remained very concerned about the murmur on our baby girl’s heart. She called paediatric cardiologist, Doctor Kenny Govendrageloo from Netcare Sunninghill Hospital to do a heart sonar. I was told that Dr Govendrageloo was about to board a plane back to Johannesburg, but would be there later that day. I remember thinking to myself, there is no way I’m going to see the doctor today as it was a Friday afternoon. He was flying back from somewhere in the country. I was wrong, he landed and came straight to Wilgeheuwel Hospital to do Mikhe’s sonar.

Mikhe’s restlessness meant only a portion of the sonar could be done, but he had obtained enough information to book her into Sunninghill immediately, and explained to me that the narrowing in her aorta could only be fixed by surgery.

When receiving news like this everyone has different ways of responding. I tried to keep myself composed and I remember asking questions unrelated to the issue. Doctor Kenny even repeated himself to me to make sure I did understand the seriousness of the matter. She had to be taken to Sunninghill Hospital immediately!

Crisis mode took over and I called my husband. To keep my emotions intact I explained in very few words that he needs to phone my parents - my emotions held me captive from doing so - and ask them to come over immediately to take care of our toddler. “Mikhe needs surgery”. This last part sounded surreal. I had definitely not accepted our reality.

Mikhe was admitted to the Cardio Thoracic Intensive Care Unit (CTICU). One by one, Mikhe was connected to all of the life monitors. Paediatric intensivist, Dr Saskia Coetzee welcomed us with some of the best advice we received throughout our heart-warrior journey, saying, “if you want to survive ICU, you take one day at a time”. She explained that we had received a lot of information for one day; to first assimilate the fact that our daughter has a heart condition and that she is going in for an operation. That was enough for one day. Do not let your mind wander; focus on what is important today. My husband and I took the decision to not consult Dr Google and to not let our minds wander to her future.

Mikhe was sedated for another ultrasound. Our separation from her felt like an eternity. We sat, very frustrated that we could not be with her, at the coffee shop when my two brothers walked in.

For anyone who would like to support someone close to them that is going through a traumatic event, take note: don’t ask, just do. My family didn’t ask if they could come through, they just jumped into the car and drove the 50km trip, not knowing if they would be able to see us. It meant the world to us to have support like that. Later that week my brother pitched up at our home with food from Woolworths that I could keep frozen and use when necessary.

Doctor Kenny met us at the coffee shop after he had done the sonar and confirmed that he had picked up two problems affecting Mikhe’s heart: (1) Mikhe was diagnosed with coarctation of the aorta (CoA), a condition in which the heart has to work more than normal due to a narrowed aorta (one of the body’s main arteries), plus (2) her mitral valve was leaking severely. What operation Mike required was still to be discussed between Doctor Kenny and cardiac surgeon, Dr Erich Schürmann. We were told that there was a high possibility that she would need a few heart surgeries throughout her life. We had no answers as it were. We accepted it as best we could - we had enough information to work through for one day.

We were specifically asked to come through on Sunday evening as Dr Schürmann wanted to meet with us. Sunday evening, I thought to myself, does he not have a family? I was continuously amazed at the effort this team were putting in for our little girl. I felt somewhat comforted in it: it felt like she wasn’t just a number on their list of patients, she was treated with the care she deserves. Visiting hours did however break heart. I would talk to her as much as possible during our time together to comfort her; letting her know I was there. Sadly, this had an adverse effect on her. Every time I spoke, she would cry. From there on we had to visit her in silence. I was determined to keep Mikhe breastfed. I felt as if it was the only physical thing I could do for her. Our doctor advised that she be tube fed, as the sucking action often puts too much strain on the heart, and so I would express and prepare milk for her before going to visit her.

My parents stayed the weekend and took the Monday off from work. Hiding our tears from my toddler was challenging, but with four adults in our home we took turns getting emotional. We shared our one day at a time policy with my parents - they too had many questions that we couldn’t answer. My parents accompanied me to the hospital on the Saturday night, as the effects the weekend had had on our toddler were evident, and having daddy stay with her seemed like the right thing to do. On Sunday night my husband and I met with Dr Schürmann

As I left for Sunninghill, my mind drifted to the archives. I was reminded of a childhood memory: visiting a friend and listening to a song, One day at a time, sweet Jesus by Lynda Randle. I immediately searched for the song and played it aloud to the entire house. It gave us immense strength during this time and I hope that by spreading the word, this song can mean something to someone else.

The CT scan on the Monday morning of her surgery revealed that an open heart surgery was not necessary immediately. A patch in the aorta would be enough to relieve her heart of the pressure for the time being. Dr Schürmann would be going in through her ribs.

Recovery lay ahead after the successful surgery. Mikhe had forgotten how to suck. She rejected both the bottle and my breast, which is when my emotions got the better of me. Rejection of my breast, was rejection of me. This off course was not true, but in all the chaos and emotion of having your baby go in for a surgery, I somehow convinced myself that she had forgotten me, as I had only seen her during visiting hours and couldn’t even speak to her, let alone hold her, hug her and comfort her during her pain. While in ICU, a speech therapist got her to drink from a bottle again and confirmed her silent reflux - something that I had suspected. Mikhe recovered well in ICU and her medicine schedule was drawn up, we were off to recover from home. I did a lot of skin-to-skin-time with her and within two days she started breastfeeding again.

Her follow-up appointment confirmed the pressure caused by the CoA had reduced significantly and her heart size returned to normal. Her mitral valve leak went from severe to mild. Another operation is not on the table for the time being. Mikhe will continue to do her check-ups regularly as there is still a possibility that her aorta may become narrowed as she grows. Our little girl is recovering well at home and she is one friendly baby! By the time she turned 5 months, we discovered that I am 8 weeks pregnant (no fertility treatment) with yet another miracle baby. This came as quite a shock as Mikhe and the new baby will differ only one year – almost to the day! Luckily we’ve learned, we’ll take it one day at a time and at the end, all will be well.

 

© Maboneng Heart and Lung Institute 2018 | Images: Eumari Vosloo

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