I Prayed To God To Help My Premature Daughter And The Answer Surprised Me

Diodi van der Berg's second pregnancy was as difficult as her first. Her daughter, Aliana, was born 16 weeks premature and her gutsy fight for life taught Diodi several tough life lessons.

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I found out I was pregnant in early 2014. With a 6-month-old boy, a very demanding job as a chef and living in a tiny 4th story apartment with my (now ex) partner – the day I found out I was pregnant again was not a very happy one.

It took some time adjusting to the new situation we found ourselves in, and for the first few weeks, we kept the news to ourselves. But by the time I reached the 16 weeks mark, we were excited to welcome a baby girl into our little family.

At the time I was working 12/13 hour shifts at one of the best restaurants in my South Africa with the apprentice-turned-head chef of my role model chef, Heston Blumenthal. I had the dream job, a happy family and a baby girl on the way, but that soon changed.

I had some minor complications which led to me having to make the hardest decision of my career. So, a week later I quit my job as a pastry chef.

I was in pain, but the nurses refused to give me pain medication

It was around 24 weeks that I started experiencing cramps. I went to my GP who did a sonar and was concerned about the amount of amniotic fluid in my womb, so I was referred to my gynaecologist.

The next day, while I was still experiencing cramps, the gynaecologist told me that everything was as it should be, and that a bladder infection caused the cramps.

My now 5-year-old son was born six weeks premature, and that was also disregarded as a bladder infection, so this news made me feel understandably uncomfortable.

By that evening I was crying from the pain and what I knew to be labour pains. I was scared, confused and so incredibly angry. Angry at the doctor, angry that I quit a job I loved so much and angry at my body, failing to do the one thing it was supposed to do.

I ended up going to the maternity ward later that evening, convinced that I didn’t have a bladder infection and was in fact in labour. They reluctantly admitted me to the ward and told me the doctor would come by in the morning to check up on me.

I was in pain, but the nurses refused to give me pain medication, and eventually ignored my requests and pitiful whimpers, so I stopped asking. Instead, I remember laying, crying silent tears in a dark ward with a couple of other moms-to-be.

A nurse came just in time to help me give birth to my baby girl

By 3am I was in agony. My body was screaming for me to push – a natural, normal birth instinct – while my mind was telling me not to, to wait for morning, to wait for my doctor. I don’t remember making a sound or calling a nurse, but at that moment when I couldn’t fight against that instinct any longer, terrified and in tears, a nurse came just in time to help me give birth to my baby girl.

In the dark ward, not in theatre, not with my doctor, with no medical procedures or pain medication, next to a mom who was probably awaiting her scheduled c-section, Aliana was born.

One nurse took her away without a word, while two others were left, cleaning the mess up.

She was 16 weeks premature. I was under the impression that I had just been through a stillbirth, so I sent my partner a message that we had lost our girl.

I couldn’t deal with the loss at that moment; I just wanted nothing-ness

I then closed my eyes and, utterly defeated and exhausted, fell asleep. I couldn’t deal with the loss at that moment; I just wanted nothing-ness.

I was woken up around 6am with my doctor and partner next to me. He explained that Aliana was in the neonatal intensive care unit (NICU).

Typically, when a child is born too premature to resuscitate, the body of the infant is taken to the sluice room where it left before it is officially declared dead.

But Ali survived. She managed to keep on breathing for an hour with under-developed lungs, so they took her to the NICU. If she was determined to live, they were there to help her.

I didn’t know it was possible to feel so many emotions so intensely at the same time – grief for the baby I thought I had lost; relief because she survived, terrified by what was to come; angry for not being taken seriously; confused by all the medical terms and procedures we’d have to face – but I did.

Ali weighed 830g and was barely bigger than my hand. She was in an incubator and plugged into several tubes and sensors. We couldn’t touch, hold or even feed her. The whole setup seemed like something out of a sci-fi movie.

The odds were against her. None of her organs were mature enough to function correctly and the machines could only keep her alive. So, they started pumping steroids into her to speed up the development process.

We were told to expect the worst even if she survived this ordeal. We’d have to face the fact that she could have severe brain damage or, in a best-case scenario, cerebral palsy.

I’ve always believed that extraordinary people are gifted with special needs children. I didn’t feel like I was gifted with the patience and tolerance to give a special needs child the upbringing /attention /dedication she deserved. So, I started praying.

I was done. I was tired. I was heartbroken

I didn’t really have a good relationship with God, but I prayed. I cried and prayed a lot. I asked for my baby girl. I asked for the patience and strength to raise a (possibly) mentally disabled child. I promised obedience and begged to have this baby. But the more I prayed, the worse she got.

One organ after the other would fail and be medically ‘assisted’. Prayers. Tears. Begging. Bargaining with God. One complication after the other.

I was done. I was tired. I was heartbroken. I felt as though the more I wanted her to live and the more I begged God to help my baby, the more he kept saying ‘no.’ They say God has a plan, and sometimes, like those three awful weeks in the NICU, we are unable to accept His will. We refuse to listen to him. We’re selfish that way.

It was the day before her last day with us; we were driving to the hospital, tired and done fighting, when I realised that something was really wrong. That in my heart I knew what we were doing was so very wrong. God had given us his answer.

That day, for the first time since Ali was born, the nurses were cleaning her incubator and I was allowed to hold her. Pipes and tubes and all, they helped her into my arms, and she went into cardiac arrest. They resuscitated her and put her back into the incubator. I felt like a complete failure.

We were playing God – and I hated that thought even more than I hated to take Ali off life support

The paediatrician came around and asked us to see him in his office. We had to make a choice. We could take her off life support – the only thing keeping her alive at that moment, or we could wait it out for her organs to mature and raise a (possibly) brain-dead baby.

That’s when I knew. We were playing God – and I hated that thought even more than I hated to take Ali off life support. I prayed, and God answered. And it was time to listen.

The next day we stood by as each tube was removed and the machine was powered off. I was finally allowed to hold her like a normal healthy baby – only I was holding her while each breath was a gasp for air and every movement was her organs failing and body shutting down.

It took two weeks to finally have a breakdown

I didn’t cry that day. I didn’t cry the few days leading up to her funeral. I didn’t cry then either. I felt like I wasn’t allowed to cry. I wasn’t allowed to mourn – I made that choice, and I had to live with it.

It took two weeks to finally have a breakdown. To be angry and to feel such intense sorrow, the incredible pain of losing a child. My baby girl. It took two weeks to realise that I was allowed to feel and mourn and so I did.

One year later, just before Ali’s (would be) first birthday, I finally opened up to my mother about all the feeling I’ve kept locked up. She suggested I should celebrate Ali’s birthday, and not her death day.

So now, every year on her birthday – like we did on the day of her funeral – I send a red balloon up to her with a prayer and message, and I celebrate her short life.

Now, four years later I’ve learned how to survive. I’ve survived a toxic relationship with a narcissistic partner. I’m surviving being a single mom. I’ve survived being unemployed in a tough economy and now have my dream job – working from home.

I’ve survived the deaths of three family members this year and deep down I know it’s because of Ali. She brought me closer to God. We still have a strained relationship, but at least we have one, and that’s because of Aliana.

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