Monday, 27 October 2014

About being a twin

Since having my twins, I have been doing more thinking about what it means to be a twin. For Ash and Wren, I hope it means a lifetime of friendship and sisterhood, with all the good and the bad that comes with it. Of course, I wish and hope that Phoenix is the third part of this triad of love and she creates strong bonds with her younger sisters. 

I wonder if coming second, and always having Phoenix as part of their lives, will impact their acceptance of her. She has been a consistent part of their life ever since they came home from the nicu. And at 10 months old they are fascinated with her. They try to get Phoenix's attention and try to get close to her on the couch. They follow Phoenix across the room and always have a smile for her. She is a permanent part of their existence in a way that the twins are not for her. 

Phoenix still knows and remembers what it was like to receive all our love and attention. She remembers a time when she had peace and quiet and time alone with mom or dad or her beloved iPad. 

It's been hard for her to begin accepting their presence and what it means in terms of one on one time with us. She's generally very good with her sisters and has found her own way of getting back at them for so thoroughly invading her space - she invades their space now. 

Phoenix's new favorite spot to hang out by herself and play games on her iPad is Ash's crib. She very patiently waits for the twins to wake up in the morning, follows me into their bedroom and hops into Ash's crib as soon as I take Ash out. Then she asks us to turn off the light and shut the door. 

I grew up as a twin too, but in our case Meg and I came first and our brother came next. Apparently, we did not accept his presence as gracefully as Phoenix has accepted her sibs. In fact, according to my mother, we both ganged up on him repeatedly and were quite convinced we didn't want him. 

I know that my twins are identical because right from the 7 week scan they were seen to be in the same larger sac and shared a placenta (mo/di). Back when my mother gave birth to us, doctors thought that when twins were born with separate sacs and placentas (di/di) that they had to be fraternal. Because of DNA testing we now know this is not the case. Approximately 6% of di/di twins are actual identical. 


So, even though my sister and I look remarkably similar, have similar facial features, body types, height, hair colour, eye colour and blood type, we always thought we were fraternal. Looking at us, you know that we are sisters, and most people could guess that we are twins. However there are differences too. 

Until Ash and Wren were born I didn't know that head shape could impact ones facial features so much. But the girls have different head shapes, and to me look very different. I know they are identical twins, but if they had been di/di, I wouldn't be sure. They look disimilar enough to me to think fraternal. 


Maybe, it's the same with Meg and I. In order to know for sure, I finally ordered a zygosity test from a lab in the US that tests twins to find out if they are identical or fraternal. The tests are on their way to our respective houses and in a few short weeks we will know the truth!

In reality it doesn't mean that much. We are the individuals that we are, and the formative years of the development of our personality and our sense of self has passed. However, I can't help but wonder how much of our very different career paths (myself a teacher; Meg a photographer) came from a self perception that we were no similar than any other set of siblings and that if we had know we were identical, if it would have impacted our life trajectory. 

I read an article recently written by an identical twin who specialized in working with other identical twins trying to develop a better sense of self, separate from their identical twin. The author found  that it is important for parents to emphasize that each twin is their own separate, distinct and valuable person, not simply because they are part of a twin set, but because they are both individuals with their own quirks, strengths, weaknesses, hopes and dreams. Ironically enough, the twin sister of the author works as a therapist as well. 


Loss of my triplet

I've been thinking a lot lately about what significance my lost triplet holds in my heart and in my head. 

We found out about our three little embryos at my first ultrasound after my successful iui. We knew the chances of twins 11%-17% based upon my own history as a "fraternal" twin. Those are pretty good odds. The odds of triplets from iui was about 1% and the odds of higher order multiples was much less than 1%. 

You wonder if a multiple birth will happen to you, but you never really expect it. I was ecstatic when the US showed 3 little heartbeats! We did it! We conceived our babies. One of the very first things out of the doctors mouth was "selective reduction" and that we needed to consider it. 

We were excited and scared, all at the same time. Triplets! How many people get to be pregnant with triplets? And within the triplets was a pair of mo/di twins (identical, sharing a placenta). 

Identical twins and a single baby. It was a lot to consider. Looking back, I can see that the danger and reality of trying to carry 3 babies and trying to care for 3 babies never really set in. I had twins at 31 weeks after my water broke at 30 weeks. I shudder to think how early the babies could have been born if baby  C had made it. 

I love my life now with the twins. I can't imagine risking their health and safety with a third fetus growing. Yet, it was my baby too. It was alive, grew for a while and passed away. 

What if it was a girl and was identical too? What if it was a boy, giving us our only son? It's a lot to consider. 

Would we have considered SR, to make it more likely for the twins to survive and to make it to a gestational age where they could (hopefully) avoid serious disabilities? Would we have tried to have them all and then lost them all? I read a news story recently where a couple lost quintuplets. They lost ALL their babies. Heartbreaking. It makes me think how lucky I am to have the two and their older sister. 

I am especially lucky because the twins developed twin to twin transfusion syndrome (TTTS) during the last week of their pregnancy. Many, many babies die from TTTS. Some moms lose one of their babies. Some lose both. It takes more babies than SIDS does each year, yet almost no one knows what it is. 

My MFM doctors tracked and screened the babies growth diligently while I was pregnant. It developed undetected in one week, the final week before I delivered. That's how fast it can happen.

I was lucky. Ash, my donor twin, gave blood and nutrients to Wren, the recipient. Sometimes this causes strokes and other major impacts on the donor twin. In my TTTS group, a number of the surviving twins have developmental delays. Ash has a dairy allergy that Wren does not have. She also had the extra hospitalization for NEC. She is slightly behind Wren in her gross motor skills: Ash sat and crawled a few weeks after her sister did. However, Ash had sounds earlier than Wren and appears to be a better eater than her sister so far. 

Having already raised a baby with a developmental delay, I've got the milestone chart tucked nearly away at the back of my brain. I don't stay up at night worrying about it, but delays are something I am watchful of. I'm happy to say that both Ash and Wren fall well within the normal range for both their actual age and their adjusted age. No delays so far :). Of course, there is no guarentee that there won't be delays in the future, but for now the twins are still ahead developmentally of where Phoenix was at this age. Which doesn't make me sad by the way. It makes me appreciate that we had longer (and still do) at each stage with Phoenix. 

While I was doing reading about loss in multiple pregnancy, I found an organization called CLIMB Centre for Loss In Multiple Pregnancy. They have many, many stories of families losses of one or more of their multiples. If you have experienced loss in a multiple pregnancy, you can contract them here: http://www.climb-support.org

Monday, 18 August 2014

Human Rights Challenge.

I received the application for my Alberta Human Rights complaint in the mail last week and I filled it out today. Four pages of writing to tell our story, convince an investigator that the Alberta government is violating my fathers (and everyone else in his situation) human rights; with the hope that in the end, the piece of legislation which governs long term care  and access to wait lists is either struck down or modified. 

It's daunting. But exciting. I feel we have a real chance of being heard. My fathers rights are clearly being contravened. It is discrimination based upon his place of origin (Ontario) and based upon mental and physical disability. My mother, as an able bodied person of sound mind, is free to move to Alberta and access all the services she needs after 3 months, including access to health care. My father on the other hand, cannot access the services he needs to sustain his life until he has been a resident for a year. If he was less disabled and required less care, the one year residency wouldn't apply.   
This clearly discriminates on the basis of mental and physical disability. 

I've written this all out, including the impossible situation it has put my mother in. To remain isolated in Toronto or to move to Alberta and abandon my father in his long term care facility there while she gets the emotional support she needs here. 

Alberta's solution is to offer private care at the cost of $7500 a month. It is two tiered health care at it's worst. Where average income or poor Canadians must abandon loved ones in other provinces while the rich can move their loved ones close to home. What's worse, is that this policy allows the rich to cue jump, even within Alberta, because these "private" spots are found in public facilities. Which means that average Albertans who are able to apply to the wait list wait even longer for a spot in long term care. 

I'm just waiting for my formal rejection for being added to the waitlist from Alberta Health Services. Then the application goes in and we see what happens.