THE BACK STORY (the reason why we have started P4P)
I know how hard it is to go through the journey of having a premature baby. I am a mother of a surviving “twenty seven weeker” twin. This is seen as extremely preterm.
I know how emotionally draining it is, I know how much self-guilt you encounter, I know how your life is completely different not because you are now a parent, but because your parenthood started so different than what is regarded as the norm. And that is why I wanted to give something back. Our journey of having a premature baby is not mine to keep. My pivot point is that all this happened so that the works of God might be displayed. So here I am, with my other two colleagues starting a non-profit organisation “Projects4Preemies”. I need to share the story; I want to help other families going through this. I didn’t really understand what premature babies meant, before I had to experience it first-hand. I founded this organisation to help make this very difficult journey easier.
My daughter’s list of challenges that she survived is long. She spent 71 days in Neonatal ICU (NICU). She was born second (980g) at 22:33 on 19 July 2019 through an emergency C-section after her brother was born naturally at 20:50. She was born without any signs of life – her Apgar score 0. She was resuscitated (3 times, ventilated, central lined and received a brain sonar (she had a grade 1 brain bleed) all within the first few hours of her life. Her brother lived for 37 hours. He was also resuscitated at birth, ventilated and central lined. I was only able to hold him after he passed away. A very hard reality. His weight was 1.2kg – he had no brain bleed and initially seemed stronger yet he lost his fight.
His sister survived a brain bleed, a hole in the heart, collapsed lung, jaundice, a swollen bowel, low red blood count and had about seven blood transfusions. I only got to hold her at two weeks after birth, the day before her brother’s funeral. Tubes fed her milk, lights kept her warm, and her crib mostly wrapped with cling-wrap to keep the heat in.
The journey didn’t end once we were discharged. The first year we were more in hospital than out of it. She had 9 viral infections before 14 months and various bacterial infections. So bad that she ended in ICU again and this time around the doctors had to resuscitate her five times. A primary ventilator kept her alive for three weeks until she slowly but surely progressed back to room air. The journey continues with weight gain, milestones to be reached at adjusted age and taking things slower to meet our new reality.
And all of this after we struggled for years to fall pregnant and had to follow the route of IVF.
Now I have another child, born early term. A normal delivery (precipitous labour) although it was a planned C-section. He is a God sent, my rainbow baby. An experience of how normal having a baby can be compared to my first experience. Grateful is an understatement. Yet it also brings more perspective to what having a premature baby really means. Mommy and daddy I am here to help.
Covid-19 has brought another layer to the many challenges with a premature baby. Visitation hours have significantly reduced with some NICUs only allowing 15 minutes a day for a parent to visit their child. The post-traumatic stress of parents are escalating and attachment between child and parents are being hampered.
We know early intervention therapy help premature babies, yet our reach is limited. Long term issues are known to families of premature babies and in many instances early intervention can boost a premature baby’s future.
Donor breastmilk is limited. Breastfeeding in a NICU environment has its challenges and many moms have to express. Equipment is expensive.
The public’s knowledge about premature babies’ remains limited, but also the access to valuable information that can help parents.
THE SAD STORY
THE BEST STORY
In 2019 projects4preemies helped families with premature babies through
• donations of 50 octipals to a government hospital for therapeutically use
• 11 care parcels to private hospitals families
• had its first fundraiser, and raised R3,000
• established a network with medical professionals that has a passion for premature families and babies
• raised awareness on a local radio station, PretoriaFM and articles were published in Beeld and Baba&Kleuter
• sponsored a family to attend a baby massage class and a group counselling session
• sponsored preloved clothes, breast pump and a lactation consultant session
• held its second fund raiser and raised R3400
• donated ten octipals to a vulnerable home for premature babies
• established a back-a-buddy crowd funding campaign and raised R1300
• donated 44 care parcels to families with a premature baby
• completed a preloved clothing drive and helped 73 families of premature babies, at a government hospital, with preloved clothes
In 2021 projects4preemies
• raised awareness on two local radio stations, RSG and PretoriaFM
• donated 32 care parcels (and counting) to families with a premature baby
• co-hosted a crochet class
• run a mother’s day competition
• and treated nurses at two hospitals with treats on nurses day
THE HOPE STORY
The organisation’s mission is to: “Our mission is to inspire, encourage and support families affected by preterm birth and make a positive impact in the lives of those fighting for premature babies.” The organisation’s strategic focus areas and objectives are to create:
To increase the public’s knowledge about premature birth, and premature babies.
To increase awareness about the dangers of premature birth. Education
To create platforms, networks or activities for families with premature children to learn from each other, and experts.
To seek partners that can help address special educational needs of premature children. Support
To build financial assistance programmes to support families who are nursing their preterm babies in NICUs.
To provide emotional support to families with premature children.
To support research that can improve the outcomes for premature babies (for interventions that work).
CHANGE A LIFE TODAY
Supporting our mission is our three objectives of awareness, support and education.