Yousha’a – CHD Journey of a little Angel Heart Warrior

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I gave birth to a beautiful baby boy at 12:05 on Saturday morning, the 3rd of March, 2018.

His due date was the 26th, today, and we had a caesarian planned for the 13th, but in true anarchist fashion, the little sprocket chose to make an appearance out of the blue 10 days early. We had chosen not to know his gender before birth, so that was our second surprise for the night.

Having an emergency caesarian is no joke when you suffer from a rare autoimmune neuromuscular disease and your baby was diagnosed with several congenital heart defects at 13 weeks of gestation. Trying to cram all the important information your own OBGYN has on you to a group of Doctors you’ve never met on a Friday before midnight is surreal.

Little things like letting the anesthesiologist know that he will have to go light on the spinal block because anesthetic is contra-indicated for your Myasthenia Gravis. Or telling the pediatrician she may notice low Apgar scores for your newborn who may also present with transient neonatal MG at birth as well as bringing her up to speed on his heart defects so she knows to expect a “pink” blue baby because of the particular CHD we were dealing with.

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At 36 weeks 5 days, the baby was making an early entrance and was still small in size compared to what we had been trying to achieve.

Being unsure if the little bub would make it, or if indeed I would, I watched the entire caesarian section transpire in the reflective overhanging surgery lamps not wanting to miss a second of my baby’s entry into the world.

But enter he did! With the umbilical cord, as thick as his daddy’s thumb, wrapped 3 times around his neck. I watched as the OBGYN counted off the number of loops as he unwound them gently, and then pulling him out told us, “It’s a boy!”

The pediatrician instantly swooped in and our baby was rushed off to be checked out. I had been warned early on in the pregnancy that the first time I saw the bub would probably be in the Neo-Natal ICU 24 hours later and I wasn’t expecting to get to hold him at all at birth.

This news had caused me a great deal of anguish because I desperately felt like the whole experience was too clinical compared to my previous midwife delivery water birth. Also, with his life hung delicately in the balance, I wanted to make sure I could spend as much time as possible with him.

Imagine my surprise when she brought him back a few minutes later and gave me the tiniest bundle to hold. He had weighed in at 2.305kg – at least 500g short of what we were hoping to achieve in another 10 days. But he was perfect in every other aspect.

The baby was then taken to NNICU and I was stitched up, all 6 layers, and moved to a private ward where I was forced to spend the next 12 hours in a leg compression device. After threatening to remove them myself so I could walk over to see my baby, the kind OBGYN asked the nurses to remove the contraption saying walking would make for better circulation anyway.

Seeing him for the first time the next day was like witnessing a miracle. After 2 miscarriages, I had lost hope of ever having another sweet child to call mine. The anguish of my pregnancy, being told he may not make it in utero, and panicking every day that I would lose him made the moment bittersweet – I knew he still had a very long way to go to be healthy.

The baby suffered from Hypoplastic Right Heart Syndrome. A rare condition where the right ventricles of the heart failed to develop adequately. His pediatric cardiologist was happier with his echocardiograms after birth because there was good outflow of blood through his pulmonary artery and he felt it was something they could work with. He divulged that he would be trying to get the baby to a one-and-a-half ventricle system instead of the single ventricle system anticipated before. Great news for us!

It took us the whole weekend and then some to name him. Wanting a name that would be an adequate choice for the struggles of life ahead of him, we finally agreed on Yousha’a – a Biblical name meaning “God is my Salvation”.

3 days after his birth, he underwent his first procedure. A balloon valvuloplasty to assist with the stenosis of his pulmonary valve. Having a touch of jaundice meant he spent the morning under blue light before the op.

The operation was carried out in the catheter lab and we were allowed inside wearing fully disposable medical clothes to watch them prep him. After kissing his little chest, we spent the next couple of hours outside the theatre waiting for him to come back out.

The procedure was deemed a success and he was taken off his meds for the next two days to see how his heart liked the newly flowing valve. Unfortunately, with his Prostin stopped and his PDA starting to close, he could not maintain his oxygen saturation levels. He was put back on the meds on Day 2. The good news was that his right ventricle did not commit suicide and shut down.

Open-heart surgery was booked for his 7th day, Friday. On that morning, his eyes opened fully for the first time and I was allowed to carry him since the tube to his umbilical cord had been removed for his big day. I had not carried him since the day he was born, only being allowed to change diapers or syringe feed him expressed breast milk by the ml while he lay connected to his monitors and tubes in his isolette.

The anesthesiologist wheeled him to theatre with us right next to him, but kissing him goodbye at the door was hard.

And then the wait began. We were expecting anything from 3 to 5 hours, but the pediatric cardiologist returned within the hour to let us know that they had decided not to operate. He had been anaesthetised and on the operating table when the cardiac surgeons had decided that he was too small.

The smallest BT Shunt is 3mm, suitable for a child weighing 3kg. Yousha’a was only 2.365kg. The risks of clotting were too high and, without ego or arrogance, the surgeons decided that they were not prepared to risk his life just because they could. The consensus was that he was currently stable and it would be silly to rock the boat.

We were told that they would wait for him to gain the necessary weight and size and do the operation in a few weeks instead. The relief we felt was indescribable. Like a death row prisoner getting an 11:59 reprieve phone call from the Governor, we took the news as divine intervention.

Yousha’a was wheeled out again, awake, with a new neckline where the anaesthetic had been administered. The port was kept in so they could use it at his next procedure. The nurses in NNICU were surprised to have him back and reattached all his lines and monitors.

We brought the kids to the hospital that afternoon, even though they were not allowed into the NNICU and had not met their little brother as yet. Yousha’a was asleep after his long day, but he smiled for the first time – repeatedly. When we left him that evening, his monitors registered good vital signs and saturation levels. His night nurse was on duty and everything was running as normal.

At 9:30pm, I received a phone call from the hospital to come in immediately. He was in distress. They were trying to resuscitate him. An hour later, our worst fears were confirmed. 45 minutes of resuscitation had not been enough. He was gone.

We left the hospital at 12:05 Saturday morning, exactly a week to the minute that our baby had been born. We carried his lifeless body home to his siblings who had never had the chance to meet him. Our 7-day miracle baby had been saved from a lifetime of painful operations, procedures, and constant monitoring. But our pain, grief, and sorrow had only begun.

As his heart became whole again, ours broke into millions of pieces.

“I could only be grateful when I realized that I would rather have known you for a moment than never at all. I would rather endure this inexplicable pain of outliving you than never to have seen your face, spoken your name. I would rather be yours, and you be mine, regardless. Regardless of the sorrow, the sleepless nights, and the years I will walk this earth, carrying you in my heart.”

To paraphrase Jay Neugeboren, there is no word for a parent who loses a child, that is how great the loss is. But I would rather walk this earth for infinity carrying the pain of my loss in my heart than to have never been given those 7 days with him at all.

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Tempering temper tantrums with tea.

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When my daughter was around 3, she had her first hissy fit over some perceived slight. It could have been over something silly like that I didn’t take her to gran’s house after a play date or didn’t stop for ice cream, I don’t remember why.

She stormed into the dining room and threw herself onto the floor, kicking and screaming, bawling her eyes out. The noise was deafening and unexpected. I had never seen someone lose their shit to this magnitude before, least of all a sweet little person I loved to bits. I was completely perplexed. 

My visceral reaction to having someone go batshit crazy on me is instantaneous anger. I can go from 0 – 100 faster than you can say “Lamborghini”. Luckily for all concerned, I did the unexpected. I took my anger to the kitchen and made a cup of tea. Then I stepped over the body that was writhing on the floor, with not so much as a glance, and continued to my room.


I gently closed the door behind me, set my cup carefully down on the bedside table with shaking hands, picked up a book and tried to concentrate on the words swimming in front of my tear filled eyes. I felt that I had failed somehow. What had I done that could make her react so horribly? Why was she so angry at me and why did I feel angry at her?

After what felt like hours but was only minutes, I heard a timid knock on my bedroom door. I answered “Come in,” and there stood a red-faced, tearstreaked, snotty-nosed piece of my heart that lives outside of my body. It stood there looking confused momentarily and without another glance, I suggested this little person should give her hands and face a good scrub and then return. I was buying time because I still didn’t know what my response should be but I knew it shouldn’t be anger.

A few minutes later, a freshly scrubbed child stood shyly next to my bed and I smiled at her and patted the pillow next to me and asked if she would like to get in. She was in the bed like a flash and I offered her a sip of my tea – after all, I assumed wailing banshees must get pretty thirsty.

I pretended to read my book as she took small, noisy slurps of tea in between the hiccups she had managed to get from crying. Then I turned to her and asked softly, “Are you done shouting now?” to which she had the temerity to look embarrassed and replied softly back, “Yes.”  And then I explained to her how she had more words in her vocabulary than most children her age, that she was a very clever little so-and-so who had no problem articulating clearly in English, much to the surprise of many when she won a speech contest at the same age, and choosing to scream at me was counterproductive because I didn’t speak wail.

My daughter is almost a teenager now and over the years, I have had post it notes, letters, emails and even what’s app texts from the other room but I have never had a knock down screaming tantrum again.

My children have learned In Case Of Emergency, make tea. Bad grade? Failed a test you were reminded to study for and didn’t? Note from a teacher? In trouble with Dad? Tell Mom, wait for the initial incredulous outburst and then go make tea. By the time you return, Mom has devised a strategy to help you fix the problem and you can both sit down and iron it all out. 

After all, who can shout over a good cup of tea?

There is no substitute for a loving parent.

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Who wins when custody courts decide that a previously loving, fun, awesome parent will now get 4 days out of every month (!) to spend with a child they used to tuck in every night, read stories to, do homework with, engage with in discussions of politics, car mechanics, physics and the abstract notion of why farts smell and tears are salty? Why does the World go through such extreme measures to keep decent, loving parents out of their children’s lives?

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