Finding hope amidst the despair of losing a child

Surviving the loss of a child is an unbearable pain, yet it is a pain so many grieving mothers bear every day.

Yet pain can also be a springboard for hope and in this case has led to the creation of a new school and a transition home for abandoned babies in Ballito.

A Ballito mother recounts her anguish after losing her 11-month-old daughter as a result of a genetic disorder.

Nikki Viljoen was pregnant with her third child when her world changed forever.

“A week before Christmas we went for our routine 20-week 3D ultrasound scan. Up until then everything with my pregnancy had been going well. We invited our families to come along to the sonographers rooms to also witness the first 3D image of our baby.”

With 3D and 4D scans, you see your baby’s skin rather than her insides. You also may see the shape of your baby’s mouth and nose, or be able to spot her yawning or sticking her tongue out unlike the regular 2D scans when all you see is a grey, blurry outline.

However, it was during this ultrasound that Nikki was given the devastating news.

“Our joy turned to shock and then grief when the doctor diagnosed our baby girl with an unusual genetic deformity and recommended we terminate the pregnancy,” said Nikki.

The prognosis for children with Achondrogenesis – a rare type of growth hormone deficiency in which there is a defect in the development of bone and cartilage, is not good.

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Born with a chest cavity half the size of a normal baby, their lungs are not able to inflate. Most babies with achondrogenesis die before or right after birth because they can’t breathe properly. No treatments exist for the disorder.

Forced to decide between a late abortion or a severely disabled baby unlikely to live long, Nikki chose the latter.

“The likelihood that our baby would survive childhood was poor but I was halfway through our pregnancy and while the doctor said all her organs were strong he told us she would not be able to take her first breath.”

“When we visited a specialist pediatrician, the prognosis was the same but he told us we would have the opportunity to meet our baby girl and have a few minutes to say goodbye to her,” said an emotional Nikki.

It was with this hope in her heart that Nikki navigated the turbulent emotions leading up to the day of her daughter’s birth.

“My worst fears were kept at bay by the power of prayer and the overwhelming support from our church. While I lay on the theatre table surrounded by doctors and nurses, I felt that everything would be okay.”

“Hearing that strong little wail when Saxon entered the world was the biggest miracle,” said Nikki.

“The doctors could not believe she had survived despite all the odds stacked against her. Saxon came into the world bursting with energy, curiosity and wisdom. She changed our lives forever.”

Nikki explained how their young daughter, a medical miracle according to all the specialists, surpassed everyone’s expectations. She breastfed without any complications, was never sick and did not require incubation despite her condition.

“She did everything with gusto and a big smile on her face – her strength and brave spirit is hard to put into words, ” explains Nikki.

In March this year, at the tender age of 11 months, Saxon took her last breath and passed away peacefully in her mother’s arms.

“She died as bravely as she lived. One minute she was sitting on our bed and the next she took her last breath and passed away peacefully,” Nikki said.

The aftermath of child loss can be filled with grief, guilt, rage, fear, loneliness, and a terrible sense of anguish.

To have a child die before you, at any age, upsets what we all consider to be life’s natural order. You lose a part of yourself – this is a trauma that doesn’t go away.

“On the six month anniversary of Saxon’s passing, I finally found the courage to put my despair aside, pack her belongings and take them to a children’s home called ‘Hope’ in Pinetown.”

“As I walked through their doors I knew Saxon was with me. A scripture that I have always attributed to my baby girl from Jeremiah 29:11 was on the wall and I felt like she was guiding me, my own angel.”

It was at that moment that Nikki had a vision to start a home school and channel the funds to set up a transition home for abandoned babies in Ballito.

“Home schooling has always been close to my heart as I knew it would be something I would consider for Saxon. My one daughter is also home schooled and I know combining church, a NPO and a business is the perfect synergy.”

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“I want to create a space for children where scripture is interwoven into the syllabus. Our homeschool, a home away from home, will focus on creating an environment that nurtures independent thinkers who will walk out of our doors with a heart for people,” said Nikki.

The homeschool, aptly named SaxonVil will be in honour of Saxon and will open its doors next year, catering for up to 20 children from grade four to high school.

Nikki shares how she went from despair to hope, from grief to healing, from almost giving up to knowing life was going to be okay.

“As soon as I received this vision I found a purpose again and a way to keep Saxon’s memory alive. In the midst of my suffering I find comfort in Jeremiah 29:11:

“For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future” not in the false hope that God will take away your suffering, but in the true gospel confidence that He will give you hope in the midst of it. The best growth comes through persevering through trials, not escaping them entirely. And when we learn perseverance, we find surprising joy,” added Nikki.

For more information on SaxonVil homeschool contact Nikki at 083 320 4177 or email info@svhs.co.za. If you would like to donate money towards the transition home for abandoned babies, donations can be made to SaxonVil Baby House: FNB Ballito Cheque Account, 6237614500.

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