Miss Lila

It's international Trisomy awareness month. Meet a miracle.


In Michigan a miracle named Lila is about to turn 18 months old. Lila was born in September 2012. Six days after she was born her parents were informed that Lila was “incompatible with Life” and would not live very long.  Lila had Trisomy 18 or Edwards Syndrome.

I’ve never met Lila being that she lives in the United States and I don’t but I’ve had the privilege to be able to be able to watch her grow and develop after becoming friends with her mom Kayse on Facebook. Kayse is amazing. I’m sure she has her ups and downs but to me she always comes across as poised and ready to take on the world. I will never forget the day someone made a somewhat impolite comment on a picture of Lila and seeing Kayse’s reply. She so very graciously explained that Lila had Trisomy 18 and the picture in question was an example of one of the symptoms of Trisomy 18. I had to message Kayse to let her know how much I admired her and her reply yet another example of her grace and strength. Kayse told me that as Lila’s mom it was her job to educate people and spread awareness.

Even though I’ve never met Lila, I watch avidly for updates from Kayse about each milestone that Lila reaches. Every time she learns to do something new, I watch in wonder. The little girl who was compatible with life now knows how to crawl and loves Thor. Lila is a little girl who keeps fighting. She’s the most amazing person I know. Lila reminds me every day that you just have to keep fighting.

 I hope one day Amy and I get to meet Lila.

20 week catch-up

So I bunked a week. It was a busy week. Amy was sick and so was I. But here I am now fingers at the keyboard typing up a storm.

This second pregnancy has not been easy. Amy is a wonderful fun little girl with the energy of a few Duracell batteries. The result is one very tired me by the end of the day. I LOVE those 2-3 hours mid-day where she takes a nap. It’s the chance to have a drink while it’s still hot, eat my own food without having to share. Sometimes I just stare out the window and enjoy the leaves. Most times I take a nap. I need one as well.

This first half of this pregnancy has been exhausting on a physical and emotional level. I had morning sickness for close to 19 weeks and in between that kept getting knocked down with flu’s and colds and just general yuckiness. But it’s the last 2 months that had been the most trying of them all.

My 12 week blood tests came back with markers for Trisomy 21. Down Syndrome.

This was not something that I had been expecting. I had initially opted to not do the tests but because I was having blood drawn anyway, I gave to go ahead to take the little bit extra. It wasn’t something that I had ever imagined could happen. I was well aware that people with Down Syndrome existed. I had even thought about contacting the Down Syndrome Society of South Africa so I could befriend one of the moms. I might come across as being a bit self-righteous here but it’s very important to me that Amy learn that everyone is special and must always be treated with respect. But this was too close. Too personal. Too much.

I got the call on a Thursday and on the Monday I was sitting in the Doctor’s office to discuss options. OPTIONS can be such a dirty word sometime. Our options were all up in the air. While there were markers in the blood test, there were no markers in the scans. At the 12 week, Dr’s look for the nasal bone on the face and the nuchal fold at the back of the neck. Those results were perfect and clear.

Our options were WAIT AND SEE, A Fancy test in the Americas or Amniocentesis.

The Fancy test was not going to happen. Not in this life time and it isn’t necessarily the cost issue that is the factor. The Fancy test is REALLY fancy and all it really involves is a vial of BLOOD. Blood that happens to contains all your entire DNA and the DNA of your unborn spawn. This blood gets put into the Fancy Test Machine and viola your DNA sequence. This was not happening.

WHY? Well because I watch Bourne Identity and I watched Salt and I watch WAY TOOO MANY MOVIES. (Too many movies can also be blamed for me climbing over the unconscious girl in the back seat in the 2007 crash convinced the car was going to explode.) There is no was the CIA or the FBI or the KGB was ever going to get hold of my or Zips’ DNA. Not willingly anyway. So no FANCY test.

Amniocentesis was the second NO. Amnio is another dirty word. Amnio involves sticking a super long needle into the womb to extract some of the amniotic fluid. The amniotic fluid that would contain some of the baby’s DNA. The problem with amnio is that it carries the risk of miscarriage. A 1 in 400 chance and my current risk of have a baby with Trisomy 21 was 1 in 400. The same risk all around so we went with WAIT AND SEE.

WAIT AND SEE involved a visit to a fetal-maternal specialist in Durban. Dr Bhorat. Yes, I also snorted the first time I heard his name. What on earth could Bhorat know?

Well a lot apparently.  Our 20 week scan was scheduled with Dr Bhroat. It was without doubt the MOST expensive Dr’s visit I have ever been on. Dr Bhorat has leather couches in his waiting room. Most of the other Dr’s have your run of the mill office furniture or maybe some really nice couches. Dr Bhorat has leather because he can afford them. It did take forever to get to that point.

Dr Bhorat has spent half my life studying unborn children. He can point out all the different internal body parts to you during the scan. I had no idea what he was looking at. He kept rattling off name and pointing our heart chambers and the halves of the brain and all I saw was black blobby stuff. Because that’s all I can see. I’ve spent the last week re-watching the DVD and still can’t see anything Dr Bhorat did. But he looked at all the different ‘soft markers’ and everything looked like it should.

Dr Bhorat did some recalculations and Zip’s risk factor has changed. This was a tough 2 months to go through and to process. I know a little girl with Trisomy 18. Looking at pictures of her and watching her mom helped me realise that Zip was mine and would always be mine irrespective of how many chromosomes s/he has.

March is Trisomy awareness month. This is my own personal story. Not all of what I went through is here. But one thing I will never forget;

WE ARE ALL FEARFULLY AND WONDERFULLY MADE.