Absolutely Nothing Can Prepare You For This Kind of News: Our TTTS Story
Updated: Dec 9, 2019
December 11th for me was a day like any other. I went to work and then left for an appointment late morning. We met with our OB and once again learned that our babies weren’t cooperating for him to determine their gender. He told us we had a fine pair of babies in there and then asked when my next big scan was and told me it was good that it was that same day…perhaps his way of telling me he saw something that needed further investigation ...I don’t know. The ultrasound that afternoon was actually cancelled by the hospital but I was stubborn and insisted that they do it anyway since I was there. Thank goodness for my stubborn nature as during that ultrasound it became obvious that 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 that I was being sent to see a specialist told me that this was very serious. I remember struggling to walk out of the hospital and make calls to husband, my mom and our babysitter. I was a mess and very hard to understand. I was so very scared for my babies.
We arrived in Toronto about 8:30 that night and were admitted. We had another ultrasound at about 9:00. This is where we found out that the babies were boys and the confirmation that our two babies had Twin to Twin Transfusion Syndrome. It was explained to us that one of our sons was transferring fluid to the other. 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. What I have learned in the almost 11 years that TTTS has been part of our lives is that babies with only 8cm pockets are usually really healthy, not often very affected by the polyhydraminos 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 be 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 other discovery was that Cole’s cord was inserted very poorly, 11cm away from the placental wall.
We made the decision to have surgery to try and save both of our boys the next day and returned to our room for a night and day 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. We were warned that Cole was a sick baby, much sicker even then he’d been the night before. The ultrasound he performed then showed that there was now an increase to frequency of the reverse cord flow and the fluid pocket around him was up to 10cm and surgery was booked for as soon as possible. Nothing seemed real to us, as scared as we were, negative thoughts didn’t cross our minds. Our focus was on our wonderful boys and all the fun we would have with them.
At 5:00 that afternoon another scan was performed just prior to the incision. Now Cole was showing an abdomen full of fluid…. definite hydrops, and this meant that TTTS was now at stage 4. During surgery it was discovered that there were 14 vessels connecting our boys through the placenta and of those 3 were quite large.. After the surgery was over, Dr Ryan came to see us and explained what happened in the operating room, that he felt things went very well and what would happen the next day. He did tell us that 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 that we were scheduled to have later that morning. We went 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 of the boys where 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 this kind of news.
The walk back to our room at Sinai was the longest walk that we’ve ever made. It felt like that 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 of sadness for Cole and 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 ok and that the passing of his brother had not affected him. It quickly became apparent that 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, made the comment 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 and later that 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 that week, after an MRI and further ultrasound he was given a clean bill of health.
On Jan. 3rd I rolled over in bed and knew instantly that something was wrong. I went to my local hospital and eventually was sent by ambulance back to Toronto and met with Dr. Ryan again. Dr. Ryan told us that 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 the size of a 24 weeker. I was terrified. They began to prepare me for the arrival of this micro preemie and we toured the NICU and reality hit even harder. These little 650 gram babies on ventilators that gently shook the baby….no way, I could not do this, could not bear to see my son in that position.
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. I truly believe, having read all the medical reports and learning what I did in hospital that Cole was always meant to be Cameron’s guardian angel. There is no medical reason that the symptoms that caused Cole’s heart to fail and for him to be small in size (he had less than 25% share of the placenta and would for certain been labeled SIUGR had he survived TTTS) didn’t show themselves earlier in the pregnancy. I think Cole was doing his best to hide all that was wrong from everyone so that 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.
Cameron was born at 34 weeks weighing 4lbs 1.5 oz. He was at the 10th percentile for his gestational age making him borderline for IUGR as well. He had some serious contracture issues in his limbs from the lack of fluid to move and grow in and continued to struggle with weight gain until he was about 7 months old. He was in the care of a dietician for about 6 months and a physiotherapist for about 18 months. He is now almost 11 years old and I often think that he has the strength, energy, love and zest for life of two boys…which would make sense since he as the soul of 2.
In the last four years many things have changed in my life. Upon leaving the hospital, just over 24 hours after learning that our precious son was gone, my husband and I discussed that we wanted to do something for Dr. Ryan and Mt. Sinai… to thank them, to honour Cole and to try to help ensure that other families didn’t have to go through this heartache. I knew right then and there that 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 name Miles for Miracles, raised over $40, 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 to connect with others and to get the resources and information they need. Each time we see him he tells us how amazed he is with Cameron. The first time he told me this he was very honest. He never felt Cameron would be as healthy and developmentally on track as he is. He had hope for Cameron but fully expected there to be delays, physical and developmental delays.
As for my early desire to reach out to others, that too has had a huge impact on my life. I have hundreds of facebook friends that have experienced TTTS. I created 2 groups on facebook to offer support during 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 a foundation called Fetal Health to support others and connect them with the places and people that can help them best.
At one point at the start of this journey I had said I wanted to turn back time and change everything. I’m know now that I don’t feel the same way. Don’t get me wrong, I wish that I could go back and prevent Cole from losing his life to TTTS. But doing that would change everything and I know that 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.
This journey has shown me so many amazing things and none of it would be a part of our lives if we changed everything. And if we changed everything then the Cameron we have grown to know, to love, to admire might not be a part of our lives either. And if we changed everything then 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 …because without Cole there is no Cameron and without Cameron there is no Cole.
Shared by: Jodie Tummers
If you would like to help other families going through a similar experience, please consider a donation on the Tummers Fundraising page at Mt Sinai.