I feel like today’s theme, today’s gift, is a great follow up to yesterday. It’s a similar theme in that it speaks of the desire I was immediately drawn to in giving back to Mt. Sinai and for helping other families. Today I am expanding on this in the area of helping others but more over in helping change the way things were being done in the area of proper care in twin pregnancy as well as care and treatment for TTTS and in the way support was delivered in the TTTS ‘world’. The current standard of many of these things was totally unacceptable to me in some areas and the more I learned about how things were done, the more people I met, the more stories I heard the more I wanted to be part of the change that needed to be happen.
One of the first things I began to see happening was the way that families who had suffered a loss were treated in some of the groups I belonged to. Initially in my journey, likely for the first year or so, I didn’t notice any differences in the way I was treated in groups intended for the support of all TTTS families. Maybe I wore blinders or maybe it just was a much smaller community. I did feel that, although the support came mostly from others who had also suffered a loss and/or members of the TTTS community and not, almost ever, from the person who ran this one particular support group (which I did find odd since this person did suffer a loss and yet never responded to any of my emails after my first one and never did send the grief package that was promised) that I was welcome.
But as I said, this began to change as time went on and likely it was because more and more survivors were being born and slightly less loss was happening. The communities grew as facebook expanded and so we were seeing more and more stories of survivors. I felt like an oddity, giving support to those going through TTTS, offering hope, when I didn’t have a perfect success story. It seemed like there were very few loss families who did what I did. Looking back now I think it wasn’t so much that loss families wanted to put it behind them but rather that it was too painful to relive time and time again as you offered support. I guess that, in itself, is a gift…the ability to step outside your comfort zone, step past your grief, and offer hope. I think I began to be more sensitive, more aware of how the words that some thought were full of hope could actually hurt people who were experiencing loss when my journey was about 2 years old. Comments like ‘My babies were fighters’, ‘I prayed and God saved my babies’ and maybe one of the worst ‘My babies proved your statistic wrong’ (or something to that effect)etc began to eat at me. My babies had both been fighters. I had prayed. Sometimes double survival just wasn’t what happened for everyone and that didn’t make anyone… the babies, the moms and dads, the people who prayed etc anymore or any less important. I know that those with two survivors would argue this point with me, and since I have only my perspective to go on, it may be very valuable arguments but it is what I know. I know that some of them spoke of feeling ‘survivors guilt’ and felt loss parents made them feel bad for having survivors…so every side has a story to tell.
I tried to share my feelings and was shut down constantly. I was told that only positive stories should be shared in order to give hope. If I posted pictures of anything related to my loss then were quickly hidden. It became very apparent to me that a much more welcoming group was needed. And so I started one and it amazes me daily. It has 900+ members and is much more active than any other TTTS support group. And it was a good thing I began this group because eventually my outspokenness combined with some things I was open about regarding how some support foundations were run got me banned from another group and I could no longer offer the support there that I felt drawn to do.
But that was ok because this group that I had begun was such a place of strength, of hope, of help, of honesty. Other groups offered hopeful words and positive messages but they seemed to accept that all doctors who treated TTTS were created equally and I was quickly learning this was not true, not at all. I began to research statistics for various surgeons and soon became very involved in a group that promoted, strongly, treatment by what was labelled as ‘Top Tier TTTS specialists’. I helped moms, via Fetal Health, to get second opinions and even switched into the care of a better doctor. I helped moms and dads, via Fetal Health, to pay for the travel costs to go and see these specialists. And with this team of friends I had acquired worked (and still do) to educate the ‘expecting twins’ communities to learn what tests they needed, how often they needed to be seen, who they needed to see etc. I learned about the falsehood of ‘Acute TTTS’ which was believed to be something that only happened at delivery and resulted in a baby with too much blood and one with too little…a red baby and a pale baby. This diagnosis was believed to exist because these moms had never shown signs of fluid imbalances or size differences. What I began learning was that this condition existed weeks prior to delivery and was called TAPS. It didn’t have a lot of treatment available to it but monitoring and early delivery prevented losses to it.
I soon became involved in campaigns to educate expectant moms about it and as well, believe it or not, doctors about how often those pregnant with mono di twins need to be seen and need to have ultrasounds…and what needs to be checked in those ultrasounds. The status quo wasn’t acceptable. Being seen every 4-6 weeks for ultrasounds, as I was, was not acceptable. If the timing of my ultrasound had not happened as it did then both my babies would be dead. I was just not being scanned enough to watch for TTTS or TAPS. Being seen less after 24 weeks is not acceptable…. TTTS can happen right up until the cords are cut and it could care less how skilled or knowledgeable a doctor is. Being told nothing can be done because your babies have an anterior placenta is unacceptable. Doctors who say this infuriate me. I had an anterior placenta and have discovered that, although it makes it slightly more complicated, skilled doctors have been doing laser on anterior placentas for 10-15 years. Doctors who say the only thing that can be done now, or let’s try this for now, is an amnioreduction (where they drain off the excess fluid from the recipient) are unacceptable…and dangerous! TTTS laser surgery can often not be performed after a reduction is done.
Change in support, change in awareness, change in education, change in understanding and most of all, change in empathy levels NEEDED to happen and the desire to see it happen, the motivation to make it happen, is an amazing gift to be given. I am so very thankful to have been blessed with this gift and even more blessed with the friends, foundations and professionals who can help me to gain the knowledge and confidence to see it to fruition.