Updated: Feb 17, 2019
One family's tragic experience with infant loss and a second chance at parenthood.
Pregnancy and Infant Loss is something that can go unnoticed by the public. Sometimes the pain and sadness is simply not discussed but there are many that feel it silently.
Since I began working with expectant families I have connected with a number of people who have had the courage to share their stories with the wish to help support others who have been in the same situation or to simply raise awareness. I have not personally experienced this, however I feel honoured to be able to spread the awareness via others stories and help them gain some support.
Here is Jaki and Alex's story as told by Jaki.
"After losing our first daughter when she was 5.5 months old to a rare genetic condition called Spinal Muscular Atrophy Type 1, we were very anxious when we found out that I was pregnant again. The fear of loss is always present when you've lost a child, and it is impossible to shake it away. When I found out I was pregnant again, that was all I could think about, losing another. We did not know at that time whether this baby had inherited the same condition and had to wait until 12 weeks to have a CVS test, which would tell us if our baby had the all clear or not. That was one of the longest 12 weeks of our lives. We were absolutely delighted to find out our baby had not inherited the condition. We were being given an opportunity to be parents again.
The pregnancy itself was very similar to my first one with no morning sickness, some heart-burn and the usual aches and pains. My first daughter was born just over 2 weeks early in the middle of winter. So when I was approaching 40 weeks in the middle of summer with this second baby, I was a little bit over it and was getting very impatient to meet our second daughter.
With an induction booked for our due date, bubs decided she'd rather make her own way and arrived the day before. I had a delivery time for my first of 4.5 hours from being 4 cm dilated to having her in my arms. So, I was prepared for this one potentially being faster, and faster it was! My waters broke in bed while I was sleeping and no more than 3hrs later I was at Christchurch Women's and she was on my chest nursing away. Contractions ramped up very fast and it all felt a lot more painful than the first time round. However, both my births were unmedicated so perhaps that is why!
The birth itself saw me stuck on my back as they had concerns about the baby's heartbeat at one point and I had to wear a monitor around my belly. I really wanted to be in more of squatting position as that was worked better for me. I ended up having to push a little bit longer than my first, but managed without forceps or a kiwi cap. We also hit another wee snag. As soon as baby's head was out, they could see the cord was too tight around her neck so I had to do some very big fast pushes to get her shoulders out quickly, with the help of a tug from the midwife. Despite the commotion and my fear of something going wrong, I managed to stay focused and was determined to get her out. My poor partner had gone a bit weak at the knees with all the action. He was ok though! I think it was the scare factor of the cord incident that got him. Finally meeting her was simply wonderful.
It was quite a strange feeling, very emotional as well, given it had only been 20 months since we welcomed our first into the world, and 15 months since we had said goodbye to her. Very familiar but very foreign at the same time as this baby looked so different to her big sister.
We decided to only stay one night at St George's so we could just get home to our own comforts. We wanted to start enjoying our new little bundle and be able to watch her grow strong and healthy. Pregnancy and birth following previous infant death is an emotional rollercoaster and I suspect will be forever as memories pop back and milestones are being met that weren't met by our first daughter. I've learned that I'm much stronger than I give myself credit for, and you need this strength to get you through what we've experienced. We all have that strength in us...some of us just need a little bit more help and support to find it and navigate through the minefield of coping with infant loss as you continue to grow your family."
To find out more about Spinal Muscular Atrophy (SMA) please visit the SMA UK webpage. SMA is a very rare condition and as such does not have a New Zealand organisation to donate to. However, Jaki and Alex greatly praised the support they received from Canterbury District Health Board and do suggest that if anyone wishes to make a meaningful donation they can do so by contacting Bellyful - a New Zealand organisation providing meals for families with newborn babies and families with young children who are struggling with illness.
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For more information get in touch: https://www.emilynicholls.co.nz/newborn
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