TTTS Tuesday - Cameron and Cole's Story

Jodie and I connected through the TTTS Survivors with Guardian Angels group. Someone asked me one time what that means. It means we have one twin that survived, and one twin that is the surviving twins guardian angel. Just like Kathryn is to Tiny, Cole is to Cameron.

Jodie’s angel baby, Cole, also the recipient, like Kathryn developed hydrops (severe fluid build up.) I also learned something new while reading this story. Her surviving twin, Cameron, actually received a blood transfusion while in utero! It is so amazing how far medicine has come, but we have so far to go!

Jodie has done some amazing things since the loss of her twin… as you will read below! I cannot believe how much money she has raised for the hospital they were treated in!

Here is the story of Cameron and Cole, written by Jodie. (And today is their birthday!)

Cameron and Cole

My husband and I had always tossed around the ideal size of our family….he’d have had enough for a hockey line up if I’d been agreeable. I felt 3 was enough and had a ‘plan’ in mind as to when these babies should arrive. 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 that spring we had decided that 2 children was enough and began talking about permanent birth control.

And then that July God intervened and I became pregnant. I was pretty happy as I hadn’t savoured all those ‘last’ moments with my second son as I believed I’d have another. On September 19th I went for a scan for IPS screening, something I’d never done with the other pregnancies. I still remember the ultrasound tech saying ‘I have some news for you…there’s two babies in there’. I teared up as she showed me the two babies for the first time but it wasn’t tears of sadness or even of joy…just of disbelief at the amazing thing that was happening.

My husband, 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 where others pictured the excitement of two babies growing up together, I pictured the exhaustion of 2 newborns, the expenses and the stress. But that was the practical me talking ..not the me who marvelled 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 . Within a few days of learning about our blessed babies, I began the hunt for strollers, for 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. I was so excited about these babies growing inside of me.

I read lots of books and websites on twins, joined an online support group and generally got informed. But I always avoided any reading on what could go wrong. I always asked if all was okay with my babies after each ultrasound and marvelled at the images I saw each few weeks of my dear sweet babies. Ultrasounds did prove to be stressful though as each technician had a different feeling about the membrane dividing my babies…it was there/it wasn’t there….no one seemed 100% sure but the feeling was that they were mono-di not mono mono.

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 sex. 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 4+ 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. These large ones were located right where the dividing membrane met the placenta and Dr. Ryan was forced to create a hole in this membrane in order to ensure all vessels were ablated. 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.

And then the world crashed around us the next morning. The day started out great. I felt strong movements 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 where 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. And still expected to lie still while the cardiologist checked out our surviving twin.

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 40 cc’s of blood 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.

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 on Fetal Health’s website as well as the Twin to Twin Transfusion Syndrome’s message boards. It was amazing to talk to some of these other moms and to not feel so alone and yet at times it made me feel more confused and fearful as I learned more and more about TTTS and some of the things that others had done different that 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. Dreams 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 Jan. 3rd I rolled over in bed and knew instantly that something was wrong. I went to my local hospital and they weren’t sure what was going on but felt it wasn’t a rupture of my membranes and sent me back home with the request that I come back for a full scan in the morning. By then we knew it was a rupture as the fluid loss had increased a lot. I 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. They began to prepare me for the arrival of this micro preemie but it just didn’t seem like my reality. We met with Dr. Ryan a few days after my water broke and after scanning me he asked me to sit up and chat…. We needed a birth plan. That was reality, and it scared me senseless…he really believed we were about to meet my sons. A few days later 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.

One of the hardest things for me at that point was the loss of control I had over my life. I had big plans of how I would prepare for the birth of my boys. Research I planned to do on how to honour Cole, remember Cole and things I wanted to get…matching blankets, teddy bears etc. And now I was stuck in this bed in a city that I really truly disliked and there was nothing I could do about it.

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 and he had a severe velementous cord insertion) 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 4 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 $4000 then and have to date raised over $14, 000. We have been able to meet with Dr. Ryan a few 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 their 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 at least 200 facebook friends that have experienced TTTS. I created 2 groups on facebook to offer support and am active in numerous others. 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.

All of those things sound so positive and it might seem that 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 where 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 that 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. Eventually that hope turned to peace and a sense of acceptance. Around 2.5 years after the twins were born God lead our family to a new church and there I finally began to truly find answers to the questions and understand who Jesus really was. I realized that he had been there the whole time…sometimes I fought him and his desire to help and comfort me but he never gave up on me. And so I gave myself to him and 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, where one door closes he opens another for me. In order to be who God wanted me to be I had to experience trials and heartache and I can say with complete confidence that it was all worth it.

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. Doing that would change my relationship with Christ because I wouldn’t have had the same reason to rely on him.

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.

Happy Birthday sweet boys!

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katbiggie

Freelance writer at Kat Biggie Press

Alexa B, who blogs as "Kat Biggie" is a wife, mother, and writer. She has three children and one in heaven. She recently self published a book entitled "Sunshine After the Storm: A Survival Guide for the Grieving Mother" which is available on Amazon. She blogs about life after the loss of one of her twin daughters to TTTS, motherhood, all things parenting, advocacy, grief support and social good.