Ian and Ryan’s story.

Pictures of Ryan’s hand and foot during the in-utero surgery.

The Beginning of a Journey

Early in 2013 my husband Matthew and I found out we were expecting. We were excited to add another child to our growing family of 5. Everything was going well and since this was my 5^th pregnancy I didn’t go to the doctor for a while. I figured, why go to early appointments? I knew the signs of a miscarriage anyway since (my 3^rd pregnancy resulted in a miscarriage). I continued doing what I was doing. At the time, I was a stay at home Mom of 3, babysitter of 3 extra kids, and a Mary Kay consultant.

Early on in the pregnancy, I started spotting which had only ever happened to me once before and we had lost that baby. The spotting scared me a little, but after a couple weeks or so the spotting stopped. I had my first appointment with our family doctor at around 3 months. She found the baby’s heartbeat quickly, and ordered some bloodwork. Everything looked good. During the second appointment, with our family doctor she mentioned my hCG levels were high – still normal, just higher. (hCG is often known as ‘the pregnancy hormone’ as it is produced by the placenta after implantation. A higher hCG level can be an indicator of twins) My next appointment was with my obstetrician at just over 18 weeks. I mentioned to her I had been feeling like my tummy was a bit big lately, I was a little more tired, headaches were a little worse than I remember and I had some bad round ligament pain in my back – I usually didn’t get that till later in the pregnancy. She said those things were likely because this was my 5^th pregnancy. She checked baby’s heartbeat – which was good, then said I could sit up… no measurements? Odd. I asked why, she said I looked fine. I didn’t push it since she seemed to be in a hurry, and I had an ultrasound booked in a few days anyway.

19 weeks with 4^th pregnancy 19 weeks with 5^th pregnancy

At 19 weeks I had my first ultrasound for this pregnancy. Matthew and I were seriously wondering by then if I was carrying multiples. We had looked up some of the regular signs of a multiple pregnancy, and I had quite a few. The day before the ultrasound I had taken a picture of myself and compared it to a picture of myself at exactly the same stage with my last pregnancy (19 1/2 months ago), my tummy was almost double the size this time! With that large of a difference we knew something was up. We chose 2 names (we usually agree on names easily). I told Matthew I would text him during the ultrasound if it was twins, since he wasn’t allowed to come in with me during the first part of the ultrasound. At the ultrasound clinic, Matthew waited in the waiting room with our youngest. The ultrasound technician was great. When she started the ultrasound I watched her face carefully. I saw a glimpse of surprise. She looked a little more and then smiled at me and said, “There’s two in there” J I was SO excited! I cried. I had to reassure the ultrasound tech that I was crying because I was happy, NOT because I was sad! I texted Matthew. They were identical twins and they shared one placenta. The tech couldn’t find a separating membrane (which worried me) but she said both boys looked good (we had asked to know the genders). She couldn’t get a good shot of twin A, not to worry though, I would have many ultrasounds from now on. (We called twin A Repete and twin B Pete during the pregnancy) When the ultrasound was done they let my husband and youngest in the room so they could see the twins as well. I had SO many questions! A doctor came in to chat with us and let us know that because they couldn’t get a good look at Repete we would have to go to the Royal Alexandria Hospital for another ultrasound next week.

The weekend was crazy: Friday I wasn’t sure what to feel and Saturday I was excited, I bought 2 books and read as much as I could. Sunday was calming, and Monday, Tuesday was spent reading and finding as much information on mo/mo twins as possible… things didn’t look to promising. mo/mo = identical twins, one sac, no separating membrane, shared placenta. Biggest risks: Cord entanglement (since they are sharing the same sac they could easily tangle their cords around each other which could be fatal), TTTS (twin-to-twin-transfusion syndrome – a problem with the shared placenta), C-section, spending most of the pregnancy in the hospital, both or one of the twins stillborn, micro preemies (born very early and as a result they could die, or be in the NICU for a long time with many complications).

On Wednesday I went to my second ultrasound. The ultrasound was long, about 2hrs. During the ultrasound, the tech explained what they were looking for. He found a separating membrane. This was good because it took away the cord entanglement risk, (so instead of mo/mo I was actually carrying mo/di twins) but the membrane was shrink wrapped around Repete, so he could barely move, and there was almost no amniotic fluid in the side of Repete’s sac (Amniotic fluid is basically baby pee - Repete wasn’t peeing much, which means he wasn’t getting much nutrition/blood from the placenta). Pete had way too much amniotic fluid. Pete was getting too much nutrition/blood from the placenta and as a result his heart was enlarged from pumping too much blood and would soon be in heart failure. He was also peeing too much, which causes the uterus to expand much faster than normal which could trigger labor and rupture the sac much too early. The placenta was long and what they called an odd shape, they couldn’t see where Repete’s cord attached to the placenta. After the ultrasound was over I was ushered into a room and was told the doctor would be in to talk to me soon.

I was scared. All of the things I had read over the last few days flooded my mind and emotions while praying everything would be alright. My twins were alive! I had just seen their precious heartbeats! I clung to that positive thought. The doctor came in and explained the twins had something called TTTS - Twin to Twin Transfusion Syndrome (I had read a few paragraphs about it in my books, but couldn’t remember exactly what it was). He explained that because of what he saw on the ultrasound one or both of the twins would likely die. He gave me 4 options – 1. Full Abortion 2. Selective abortion 3. Wait and see what happens (likely both would die if I chose this since Repete would die from lack of nutrients and Pete had an enlarged heart from too much blood flow and would likely die from heart failure, unless Repete died first in which case Pete would likely die from a stroke) or, 4. Fly to Toronto for a risky surgery. I jumped at the opportunity to go to Toronto for the surgery. Although risky, it was the best option I was given. The doctor left and told me a social worker would be in to talk to me in a few minutes.

Sitting there alone I felt overwhelmed. I knew very little about this risky surgery. I assumed I would be going alone. I wasn’t sure how we were going to afford the flights and other costs. My babies would still likely die. By the time the social worker came in I was crying, but she had brought a box of tissues. I was so grateful for this lady! She was so caring. She explained she would arrange the flights, I wouldn’t have to go alone, we would be in Toronto 3 days maximum and the flights were paid for by Alberta Health. (So thankful for our medical system!) After we had chatted for a bit she directed me to a clinic in the hospital where they were going to do heart echoes on the twins (heart echoes are closer ultrasounds on their hearts). While waiting in the waiting room for the heart echoes and throughout the rest of the day, I arranged childcare for our 3 other children for while we were to be in Toronto.

The echoes took a couple hours. My husband had gotten off work early and they let him into my room during the echoes. The tech was great and let us talk about everything - so thankful for that because sometimes you aren’t allowed to talk, or have anyone in the room. Overall the echoes went great – Pete did have an enlarged heart from pumping too much blood which was a concern, but after the surgery, if he survived, Pete’s heart should return to normal. After the tech was done, Dr. Hornberger (Cardiologist) came into the room, she explained a few things, answered some of our questions and assured us that the doctors in Toronto were some of the best. Then we walked back to see the social worker who had booked the latest flight they dared get for us: midnight that night (TTTS can progress very quickly and there was no guarantee my babies would still be alive by the time we arrived in Toronto). I was not to eat anything from midnight on so that I would be ready in case they wanted to do the surgery the next day.

We were finally home by 4pm, had something to eat and thanked my sister Rebekah for babysitting 6 hours longer than I had expected! (She was also going to watch our kids during the days and nights while we were gone and my in-laws were going to watch them during the supper/evening hours so Rebekah could still work). We told our older kids that Dad and Mom wouldn’t be home in the morning, and hugged and kissed them good night. I wrote a few instructions down for Rebekah and for my Mother-in-law. Then we packed our bags, and by that time my in-laws were at our place ready to bring us to the airport.

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