Kai's Story

The final results were in. Kai had Trisomy 13, not a mosaic Trisomy 13 where he might have had a chance of survival, but the full deal. This meant that if he survived pregnancy and birth, chances were he would not live longer than a month.

I had now had 2 weeks to digest this information, I was a midwife I knew the deal. No, I didn’t really have anymore questions. I chose to end my pregnancy.

I had spent these past few weeks staring, through tear blurred eyes at the ocean. In the car if the weather was howling with me, or on the sand when the sun was shining. I had just started a 3 month work contract, and it was keeping me extremely busy, and I was thankful for the distraction.

I know not everyone would have made this choice, and as much as I really didn’t want to part with my little boy, it seemed the right choice to make (or maybe it was the expected choice to make). The choice was made easier by the fatality of this Trisomy. Had Kai had a non-fatal trisomy such as Down’s Syndrome, I honestly cannot tell you what my decision would have been.

I was single, in my mid-thirties, had just moved country and was a constant blubbering mess.

My grief was all consuming, but my family and friends (or the few who knew I was pregnant) and my wonderful internet friends who I could share absolutely anything with tolerated my self-indulgence and were all wonderful in their support and their love.

Kai’s father, was a wonder of support though probably not through other people’s eyes. His brief emails, and knowing the news distressed him was all I needed and more than I expected from him.

I also began to feel Kai move, and we spent many sleepless nights in bed bonding as I talked to him and let him know how much I loved him, and he’d respond with his little fluttery kick.

Four Years Ago Today

A beautiful, tiny baby boy was born today, just as the sun began to rise over the city.

A beautiful, tiny baby boy died today.

A beautiful angel baby arrived in heaven today.

This beautiful baby boy angel is my son, my first born. His name is Kai. He stole away a piece of my heart that forever belongs to him, and with him went hope, dreams and any foreseeable happiness.

I had made a decision two weeks prior to end this pregnancy. I talked to Kai constantly for these two weeks, reassuring him how much I loved him, how much he was wanted, what my hopes and dreams for him had been, and he answered with wonderful, fluttery kicks. We had bonded as mother and son.

When sleep eventually came, it was plagued by nightmares, always the same… I had agreed to an autopsy, and as they slithered Kai away piece by piece, they found no Trisomy 13, and Kai was completely normal…

On my admission to hospital, I was offered another ultrasound to try and allay these fears, but genetic testing is pretty damn conclusive. I declined. Needless to say I also declined an autopsy for the same reason.

I was admitted to hospital at around 4.30pm and advised induction for a first baby at 20 weeks usually takes around 48 hours. I had the first dose of Misoprostil around dinner time. As staff I knew came in to offer their sympathies, other staff stayed well away.

I thought about the ironies of the situation. I was always the first person to volunteer to look after families having stillbirths, genetic terminations (I hate that terminology), or suspected bad outcomes. I did it because I wanted to make sure these women/families had the best care possible, and the choices of what they wanted in their labour, and their after care. Mostly, I got good care, maybe this was because I did a lot myself and verbalised how I wanted things to be.

My mum stayed with me throughout, though my stepfather, brother, sister in law and nephew spent the evening with me.

I had a second dose of Misoprostil around midnight, and an hour later I was contracting and vomiting with every contraction. I opted to have Pethidine with my Maxalon, and managed to snooze. I remember in the morning being angry that I had agreed to Pethidine as I felt like I had missed out on that last bit of bonding time with my baby.

I ruptured my membranes a couple of hours later, and an hour or two later Kai was born. Nikki, tried to take him out of the room to clean him up (he was still in his membranes). Poor Nikki, was told not to taking him anywhere, and I was more than happy to clean him up myself. And that I did.

Kai was cuddled all day. He was tiny, much smaller than your average 20 week infant, he had a bilateral cleft palate and lip, low slung ears and maybe an extra toe but not the rocker bottom feet commonly seen in Trisomy 13 and 18.

And you know what, having normal looking feet made me happy and relieved!

My sister in law came in for a cuddle with Kai soon after he was born. Oh, did I happen to mention she was 39 weeks pregnant and had spent the night before last in the same hospital contracting. The thought that her baby and Kai might be born on the same day was more than extremely distressing.

My aunty who had just been diagnosed with bowel cancer, and my cousin also came in for a cuddle. My aunty sat in the corner holding Kai for a long, long time, almost trance like. I’m not sure what was happening, but I can tell you when her cancer returned two years later, Kai’s rosebush got sick, and a few weeks later when she died, the rosebush died. I think it was their way of telling me not to have a rosebush!?! Though every year I buy myself a bouquet of yellow roses on this day.

We made a day of special memories with Kai.

The maternal fetal medicine consultant, JD came to do my discharge after lunch. She told me she was so sorry, I replied “Why? It’s not your fault”! That sticks in my head vividly, as does the offer of contraception??? I was single, devastated, and unlikely to be going out on the prowl anytime in the near future. And besides, I wanted a baby!
At 4.00pm the chaplain arrived to baptise, Kai and make a recognition of his life. This is when I really fell apart.

I howled, I moaned, I sobbed.

This was the hardest and worst moment in my life. I was going home WITHOUT my baby.
My niece and god daughter, Bella was born the following week. For some reason I thought I was strong enough to go and visit. I walked into the labour room, my brother was sitting across the room, holding his beautiful, chubby newborn baby. I walked across the room and gave him a kiss, congratulated him on his beautiful baby and lost the plot.

I ran from the room, sobbing, leaving my bag behind. I didn’t know where I was going. I just needed to be far away. I took the back stairway to avoid seeing anyone, but lucky for me, a colleague of mine was on her way up the stairs.

If Hilary had not been coming up the stairs and taken me under her wing and let my parents know where I was, I have no idea where I would have ended up???

I managed to look at my niece weeks later, and it was another couple of weeks before I could hold her. I suffered anxiety attacks thinking about seeing her, but I tried and just kept trying. I sat in the car in their drive way numerous times but just couldn’t get out. Bella represented everything I had lost!

When I did manage to hold her, with her piercing, all knowing, bright blue eyes peering at me all knowing. It was very hard to put her down!
The Scruffy Mutt came three weeks later, and he is essentially Kai’s dog. Maybe that’s why he can be such a cheeky rascal.
I have a special memory box. It lives in my cupboard. It comes out far less frequently now, but in particular the blanket and a blue rabbit that are in nearly all Kai’s (few) photos are the two things that make me feel particularly close to him.

His ashes lived in a box inside the box for about 18 months. They were my concrete evidence that Kai had been here with me, if only for a precious short time. At Boo’s Naming Ceremony, I did a balloon release with blessings for Boo. These blessings were also for Kai.

Inside a blue helium balloon were Kai’s ashes, scattered from high above to wherever they wished to settle.

His spirit was long gone from them, and the memories are firmly imprinted on my heart.

This post was first published on Lani on her blog, Me & Boo, in October 2008.

Losing a baby can feel like the most isolating experience in the world and it is something we often don’t talk openly about.  If we can let one mother (or father or grandmother) know that she is not alone in her grief, then that is a good thing.  You can help us support families experiencing baby loss by submitting your story, by leaving a comment below, and by sharing this post on Facebook or Twitter.

1 comment:

Anonymous said...

this is an amazing story of survival and a true example of what a mother's love is all about. My heart breaks for you and I am so sorry for the heart breaking loss of little Kai. You are a brave, couragerous, strong woman to have shared your story and I thank you.