‘One of the babies is transferring blood to the other.’ Our world came to a sudden and frightening halt.’: Mom details emotional journey with TTTS, birth of twinless twin

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Disclaimer: This story mentions pregnancy loss which may be triggering for some.

“My husband, Geoff, and I had always tossed around the ideal size of our family…he’d have had enough for a hockey lineup if I’d been agreeable. I felt 3 was enough and had a ‘plan’ in mind as to when these babies should arrive. We got married in November 2000, had our first son, Zack, in 2003, and had our second son, Brycen, in 2006. When our second son was about a year old, I began to plan for baby #3, but that fall proved very stressful for us financially as my husband lost his job. By spring, we had decided 2 children were enough and began talking about permanent birth control.

bride and groom getting married
Courtesy of Jodie Tummers

And then in July, God intervened, and I became pregnant. I was pretty happy, as I hadn’t savored all those ‘last’ moments with my second son as I believed I’d have another. On September 19th, I went for my first ultrasound. I still remember the ultrasound tech saying, ‘I have some news for you…there are two babies in there.’ I teared up as she showed me the two babies for the first time, but it wasn’t tears of joy or even sadness…just disbelief at the amazing thing happening.

Geoff was overjoyed at the news, but I found I was becoming increasingly overwhelmed with the thoughts of two newborns, no room in the house, double daycare, etc. Everyone seemed to show this same excitement as my husband, but whereas others pictured the excitement of two babies growing up together, I pictured the exhaustion, the expenses, and the stress of two newborns. But that was the practical me talking…not the version of me who marveled at the uniqueness of our growing family, the joy of raising two identical little beings.

It took me a bit to adjust, but soon I, too, was so very excited. Soon, I began the hunt for strollers, furniture, and baby items. And I LOVED it…I loved telling people I was having twins. I told everyone I met…the more people I told, the happier I was about the two little lives growing inside of me. And with every punch and kick, every movement, even every ache and pain, I would picture my identical twins in matching outfits smiling at the camera in my hands, playing together, laughing together, fighting with each other…and growing up together knowing each other better than any siblings really could.

December 11th, 2008, for me was a day like any other. I went to work and then left for an appointment late in the morning. We met with our OB and once again learned that our babies weren’t cooperating for him to determine their sex. That afternoon, I was scheduled for an ultrasound, but when I arrived, I found out it had been canceled by the hospital. I was stubborn and insisted they do it anyway since I was there. Thank goodness for my stubborn nature, as during the ultrasound, it became obvious something wasn’t right. After seeing 3 different people, I was left in the scan room for them to ‘check to make sure they had everything.’

After waiting for 20 minutes, I began to suspect something wasn’t right. As soon as my doctor came into the room, I knew, and I burst into tears. He tried to assure me all was well but the speed at which I was being sent to see a specialist 2.5 hours away told me this was very serious. I remember struggling to walk out of the hospital and make calls to my husband, my mom, and our babysitter. I was a mess and very hard to understand. I was so very scared for my babies.

family of 4 with mother who is pregnant with twins
Courtesy of Jodie Tummers

We arrived at Mt. Sinai in Toronto at about 8:30 p.m. and were admitted and had an ultrasound with the doctor on call. It was then we found out the babies were boys and got confirmation that they had Twin to Twin Transfusion Syndrome or TTTS. It was explained to us that one of our sons was transferring blood to the other across their shared placenta. This twin, Cameron, had no visible bladder and was stuck with no amniotic fluid around him. The other twin, Cole, seemed to be more affected. His cord was showing some reverse blood flow and there was some thickening seen in his heart. He had pockets of 8cm of fluid around him…the minimum needed to be considered TTTS.

I have learned in the almost 13 years TTTS has been part of our lives that babies with only 8cm pockets are usually really healthy, not often very affected by the added blood volume yet. I have also learned that normally in TTTS, the donor baby is smaller than the recipient, but our boys appeared to be about the same size; our recipient might have been an ounce smaller actually. This gave the medical staff the assurance that our TTTS had only been occurring for a few days but also baffled them as to why his cord flow was so affected. The doctor explained the various ways to treat TTTS to us and the odds of each. The best chance they had was for me to undergo a laser procedure that would stop the blood flow across the placenta between the babies. We were told that with this procedure, we had a 60% chance of saving both babies and an 83% chance of saving one. Without it, we had a 90% chance of losing both and a 100% chance of having at least one with serious neurological impairments.

ultrasound picture of twins
Courtesy of Jodie Tummers

We made the decision to have surgery the next day to try and save both of our boys and returned to our room for a night of little sleep. The next morning, we met Dr. Greg Ryan. We were amazed by his gentle nature and knew we were in great hands. At 5:00 p.m., another scan was performed just prior to the incision. Now Cole was showing an abdomen full of fluid, hydrops, and this meant TTTS was now at stage 4. After the surgery was over, Dr. Ryan came to see us and explained what happened in the operating room. He felt things went very well, and he told us what would happen the next day. He did tell us Cole was very sick, but we continued to feel optimistic about their future.

The next day started out great. I felt strong movements on Cole’s side, and we had a good feeling about the fetal echocardiogram we were scheduled to have later in the morning. We were taken to Sick Kids Hospital across the street and were excited to find out how both of our boys were doing. Expecting to hear from the doctor that both boys were going to be keeping me uncomfortable for the next thirteen weeks, our world came to a sudden and frightening halt.

The words ‘I’m sorry, your baby’s heart isn’t beating’ will be forever etched in my brain. We were completely blown away and devastated. Absolutely nothing can prepare you for that kind of news.

The walk back to our room at Sinai was the longest walk we’ve ever made. It felt like we were in a dream; I hoped I would wake up in my bed at home and wonder why I was in this awful nightmare. Once back in our room, we just sat there in a daze. Not knowing what to say or do for each other. We shed a lot of tears, both out of sadness for Cole and out of fear for Cameron.

Dr. Ryan came to visit us, trying to comfort us at the same time explaining that he needed to do another ultrasound on Cameron. They needed to ensure he was okay and that the passing of his brother had not affected him. It quickly became apparent they were not sure this was the case. He was showing signs of anemia, and it took them hours to decide if this was serious enough to perform a blood transfusion. One of the doctors, one I quickly began to dislike, commented that they were trying to decide if they should do the blood transfusion because they might just be saving a very sick baby.

Thankfully, Dr. Ryan had a much better outlook on things, and he decided it was totally worth it. Later in the evening, Cameron was given a blood transfusion via a very long needle inserted into my abdomen, through the wall of the uterus, and into his umbilical cord. By the next morning, he was showing definite signs of improvement, and by later in the week, after an MRI and further ultrasound, he was given a clean bill of health.

And me…well, I spent most days in tears. I felt so much guilt at my reaction to the initial news of our twins and such devastation that I wasn’t going to be raising my twins together after all. I found support online, and it felt amazing to talk to some of these other moms and to not feel so alone. Yet at times, it made me feel more confused and fearful as I learned more and more about TTTS and some of the things others had done differently which had seemingly saved their babies. Each day got a bit easier, though celebrating Christmas just 12 days after losing Cole was one of the hardest things I’ve ever done. Telling Zack and Brycen there would not be two little brothers coming to live in our home after all is still a memory that brings deep sorrow to my heart. Visions of matching clothes, holiday pictures, and shared toys for our twins were shattered. I wondered how Christmas could ever be normal for me again.

On January 3, I rolled over in bed and knew instantly something was wrong. I went to my local hospital, and within a few hours, I was on my way back to Toronto via ambulance to meet with Dr. Ryan again. He confirmed my water had broken, and told us he expected our baby to be born in the next few days to one week. They were very concerned, as he was just over 26 weeks but still measuring behind…more like the size of a 24 week. They began to prepare me for the arrival of this micro-preemie, but it just didn’t seem like my reality.

Newborn twin suffering from TTTS
Courtesy of Jodie Tummers

It is a testament to the strength and power of a guardian angel that Cameron held on for another almost 8 weeks before he made his arrival and that he required almost no interventions. Having read all the medical reports and learning what I did in the hospital, I truly believe Cole was always meant to be Cameron’s guardian angel. There is no medical reason the symptoms causing Cole’s heart to fail and his being smaller in size didn’t show themselves earlier in the pregnancy. I think Cole was doing his best to hide all that was wrong from everyone so Cameron would be at a safe point before he journeyed home to be with God and took on the role of protector for Cameron and the rest of our family.

mother holds newborn twinless twin
Courtesy of Jodie Tummers

So many things have happened in my life in the last 12.5 years that grew from those first few days, weeks, and months after our lives were forever changed. Upon leaving the hospital, just over 24 hours after learning our precious son was gone, Geoff and I discussed wanting to do something for Dr. Ryan and Mt. Sinai…to thank them, to honor Cole, and to try to help ensure other families didn’t have to go through this heartache. I knew right then and there I wanted to reach out to others going through TTTS and living in the aftermath. Eighteen months after Cameron and Cole were born, we held our first fundraiser for Mt. Sinai. We raised over $3000 then and have, to date, through the event organization we named Miles for Miracles, raised close to $48,000. We have been able to meet with Dr. Ryan many times and are working with him on a project to help families just diagnosed connect with others and get the resources and information they need. Each time we see him, he tells us how amazed he is with Cameron.

Family donates check to doctor and hospital
Courtesy of Jodie Tummers

As for my early desire to reach out to others, that too has had a huge impact on my life. I created 2 groups on Facebook to offer support during and after a TTTS diagnosis and co-founded a support group for those expecting mono di twins to ensure they are receiving proper care. I now know that if monitored properly, with ultrasounds every 2 weeks, the prognosis for TTTS is much higher. I work closely with three not-for-profit organizations that support families who are or have experienced TTTS.

All those things sound so positive, and it might seem my journey was just that, a positive growth. The fact is grieving took a lot out of me, it cost me friendships, and it changed me forever. There were times when I felt like I was in a deep dark pit and could not find my way out. I had a belief in God right from the start and very, very slowly I began to turn my belief into faith, into a relationship with God. I seemed to find little bits of information here and there that gradually helped me grow a sense of hope for my future, but it was a slow and painful journey at times. The more I explored my faith the bigger my eyes became, the more in tune my ears became, and the more enlightened my heart became. I had a great many questions, and God always seemed to put something on my heart that would help to answer them. I have found what I can only describe as a peaceful acceptance of all that has happened and a knowledge that where there is sorrow, there is also joy, and where one door closes, he opens another for me. To be who God wanted me to be, I had to experience trials and heartache, and I can say with complete confidence it was all worth it.

Two older brothers with their baby brother
Courtesy of Mark Stephen Photography

At one point at the start of this journey, I had said I wanted to turn back time and change everything. Now, however, I don’t feel the same way. Don’t get me wrong, I wish I could go back and prevent Cole from losing his life to TTTS, but doing that would change everything, and I know this is who I am meant to be. Doing that would change my relationships, would remove so many amazing people who I have never even met in person from my life. It would have changed my faith journey, which has also been so pivotal in the way I live my life now. And if we changed everything, then the Cameron we have grown to know, to love, and to admire might not be a part of our lives either, and our little Cole who has given us so many moments that have taken our breath away without ever having taken a breath might not be a part of our lives either.”

A picture of a boy in loving memory of his lost twin
Courtesy of KitKat Photography
family all grown up and outdoors
Courtesy of LeeAnn Gibbons Photography

This story was submitted to Love What Matters by Jodie Tummers of Ontario, Canada. Submit your own story here, and be sure to subscribeto our free email newsletter for our best stories, and YouTube for our best videos.

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