Stories of Hope - Jodie's Story - 7

Dr. Whittle went over the stages of TTTS and how a typical progression works.  

She was very optimistic.  She asked me a lot of questions about my symptoms and since I’d had none and because our boys were essentially the same size and our recipient’s fluids were the bare minimum needed for a TTTS diagnosis, she felt that the TTTS had been happening for days at best.  This was a good thing she said because it meant that the damage or affects would be minimal.  She told us that our prognosis was very good, in her opinion, as our boys looked really healthy.  She said that our recipients heart was mildly affected but that should not cause any problems providing we eliminated the TTTS as soon as possible.

She then explained what treatments could be done to help this problem.  The scariest was basically nothing other than monitoring and delivering if and when it reached a crisis stage.  Effectively that was a death sentence to both of our babies as we were already at a pretty serious stage of the disease with the effects on our recipient’s heart and they were so very small for their gestational age.  Another treatment involved using a long needle, entering the amniotic sac of baby A and draining off as much of the extra amniotic fluid as possible, known as an amnioreduction.  This procedure would not stop the TTTS from happening and had a higher chance of neurological impairments but it might buy us some time.  The final treatment we were told about was the specialty of Mt. Sinai and was, infact, the only place in Canada that successfully performed this procedure regularly and on an anterior placenta, which I had.    It involved inserting a laser in through my abdomen wall and into the uterus.  They would use a scope to guide this laser and Geoff and I would be able to see our babies inside of my womb.  The risks for both of the last procedures involved things like infection and preterm labour but unlike the amnioreduction, laser treatment would eliminate the TTTS.  The success rate on it was a bit scary for us... 50-60% chance of saving both babies and 90% chance of saving one baby.  But without the surgery the outcome was the scariest 95% chance of losing one or both babies. 

Geoff and I were in tears but we agreed that we wanted to do what we could to save both our sons and we asked to meet with Dr. Ryan, the head of fetal medicine, head perinatologist and the man who would perform this surgery and ultimately be the one responsible for trying to save the lives of our twin sons as soon as possible the next morning. 

That night was a long one and filled with emotion.  When we returned to my hospital room Geoff and I sat for a long time holding each other, crying and talking.  .  We were scared but felt a great sense of hope and a great sense of confidence in this man that we hadn’t even met yet.    We marveled at this amazing news...BOYS.  What a rough and tumble house ours would be, 4 little boys, how very exciting.  Trucks, cars, sandboxes, hockey sticks, soccer balls...oh the visions we shared that night!  

It became very important to us that night to name these little boys.  We had no idea then why it was so important but it was something we would not rest at til we had it settled.  We had already discussed the name Cameron and both really liked it but as of yet there was no name for our other twin and no definite decision on even the name Cameron.  I suggested the name Cole and instantly it became clear this was the names our babies were meant to have. 

We settled down in our beds…well me in my bed and Geoff on his cot beside me.  The nurse had given me medication to help me relax and sleep so I was feeling a bit fuzzy but still was not able to settle.  Geoff reached over and held my hand.  He said he’d been thinking and wondered what I thought of naming one of the boys after this doctor, Greg Ryan , who would be saving our boys tomorrow.  Our obstetrician’s name was also Greg and so it seemed like the perfect fit for a middle name for one, if not both, of our sons. 

And at that Geoff did what he always seems to be able to do, fell asleep almost mid sentence. 

And I rolled over, laid there…and cried.  I began to pray and begged God to save my sons.  I asked him to keep them safe from this disease and to keep them safely inside of me for atleast 10 more weeks.  God was good, I knew, and He would answer my prayers…I was sure of this. 

Finally I drifted off into a very fitful sleep and continued to toss and turn most of the night.  I would wake up in a cold sweat, I would wake up crying.  I was just so scared for my babies.