My Name is Tasmin Bota, and I am a wife and mom of 3 beautiful boys. I have a story to share which sits deep in my heart. Below I will discuss my personal journey and a lived experience with prematurity.
Here is my preemie story – A lived experience with prematurity.
Being a mum birthing again, you assume you may go in with a little more knowledge than the first time. There exists a confident perception of what to expect and what a baby looks like out of utero.
In 2017 I gave birth to my middle son. It was just at 28 weeks gestation, weighing in at 1,080kg, that my baby boy came into the world. A world where he will be required to gain the survival skills to thrive. Who ever thinks that their placenta would rupture? Due to placenta abruption, we welcomed my baby earthside earlier than expected.
With the trauma of the news, the process and birthing, I was unprepared for the features of a preemie baby. When I laid eyes upon my baby for the first time (who was skin and bones as fat is 1 of the last things to develop in-utero), it was a deep unpreparedness to absorb. Consequently, being thrust into a world where I knew very little.
The preparations of a lived experience with prematurity
To feel ready for any deep-hearted challenge, we prepare for the worst. Imagine having your baby here and facing your worst fears as the first step towards loving them. After all, how could someone so small survive? Picturing a tiny, vulnerable human who hasn’t fully developed some of the significant aspects needed to survive out of utero begs that question.
My son was put on a ventilator a few hours after being born. It was a whole week before they could take him off it. That week was a very long week for a mother postpartum separated from this baby I brought into the world. But when they took him off the ventilator, I felt hope enter my heart again.
He was fighting, and so I needed to fight too
Our journey was an absolute rollercoaster ride. Afterwards came many different diagnoses, but when the fifty-fourth day arrived, I could finally leave with my baby. Those fifty-four days felt like a lifetime of fighting for my baby’s survival. When in that position, every single moment of every day counts.
That time in the hospital is long, lonely and tumultuous. While in the hospital, I bonded with some other mommies. Therefore, once discharged, I started a WhatsApp group to keep in touch. That’s how the beginnings of Preemie Connect began.
Preemie Connect – A lived experience with prematurity
Who better to understand your heart than those going through the same thing?
As is with everyone, there are journeys and support systems unique to each other. Some heal and find spaces for their needs sooner than others. However, as the babies grew and got stronger, life took over, and some mommies stopped communicating. But I found I still had questions and concerns.
A search for broader knowledgeable support with preemie life
Consequently, I searched for an online support group, one South African-based. My search was not successful. There were no groups that I could find to suit my needs.
And Preemie Connect was born.
What started as a support group for families affected by prematurity soon evolved into an education and advocacy group.
Through Preemie Connect, I have provided parents with a safe space. In this space, parents can ask questions they may not always feel comfortable or confident asking medical professionals. I created a space where parents with a lived experience with prematurity could raise their concerns with others like them. Parents with full-term children will not be able to hold this safe space in general groups, so here we can provide that. It has also allowed me to share my story worldwide on many platforms.
Being able to spread my experience allows for an openness to other parents on this journey, feeling alone.
As a parent representative, I am honoured to be a part of GLANCE (Global Alliance for Newborn Care).
Preemie Baby World
At the beginning of 2022, I finally realised my dream after leaving my full-time job. I started my own preemie baby clothing store called Preemie Baby World.
My hope was to do this for a very long time; however, many obstacles prevented me from realising this dream sooner.
I started the store because I remember how even the tiniest baby clothes could not fit my preemie. And I wanted other preemie parents to experience their little ones being able to wear cute little outfits that fit them perfectly.
The Preemie Journey Continues:
A lived experience with prematurity doesn’t just disappear and fade away one day. One year ago, at five years old, my preemie was diagnosed with mild hypotonic cerebral palsy. And once again, our lives were rocked. We had to re-adjust our hopes and dreams for our child.
My preemie will be six years old soon. And this journey has taught me a few things:
- Prematurity is not a ‘one size fits all’. Each preemie baby’s journey is unique to them.
- Not all Preemies “catch up” by age two. I feel that this is a false narrative given to parents of preemies and should be removed entirely from medical terminology.
- Prematurity is a chronic condition and something that can and will most likely affect a preemie for the rest of their life. Some things may only come up in the later stages of childhood or even only in adulthood. But if this is treated as a chronic condition, it would be monitored for a lifetime.
- Preemie parents are going through the most. No one can quite understand the traumatic experience of having your pregnancy end early and the start of your baby’s life too soon.
Then there is the constant battle of emotions as you navigate the hospital journey, which is full of highs and lows. And if you are lucky enough to take your baby home, it’s being thrust back into the world. A world where nothing has changed for everyone else, but everything has changed for you. It’s constantly worrying about your baby. Having to attend the million follow-up appointments after discharge (that no one tells you about beforehand). On top of that, it is learning to deal with your anxiety and PTSD. Then the need for help but being too afraid to ask for it always lurks in the wings.
To conclude, my lived experience with prematurity
With all that said, I would keep my journey the same. It’s been complex and never-ending. But it has changed me as a person for the better, and it has given me so much purpose and meaning. It has been life-changing in so many ways. This experience is a part of the person I am proud to be today. Having a lived experience with prematurity has birthed so much goodness into the world through me and made me a better parent.
Reach out; we are here, along with many others who see you. We are ready to validate your concerns and offer our hands in support. Ask for the help you deserve, and Tasmin will embrace that request. Safe spaces exist and are created now. You are not alone in your journey. We understand the importance of community and connection. Let us point you where you can be heard and find the space you need.
Contact Tasmin here:
Social Media: @Preemieconnect
Number: 064 508 5445
(We also do preemie packs for mum and baby.)