Twinfinity began as a group of Canadian moms who had twins who suffered from Twin-to-Twin Transfusion Syndrome. When we were dealing with TTTS we discovered that there were very limited resources available for Canadian families who were going through what we were and felt the need to fill that void. We began with a Facebook group called TTTS Canada where we have linked parents together to discuss our stories and offer support to others like us. Recently we created an online community (http://twinfinity.proboards.com) for parents dealing with fetal distress disorders to find meet others who have gone through similar situations and can offer support. Here are a few of our stories:
In December 2008 it was discovered that Jodie Tummers’ twin boys, Cole and Cameron were suffering from TTTS. She was immediately sent to Mt. Sinai for assessment by Dr. Greg Ryan. Laser surgery was performed immediately as the TTTS was progressing at an alarming rate. The following day Jodie and her husband were devastated to learn that their recipient, Cole, had passed away and that Cameron was very ill with severe anemia and required an intrauterine blood transfusion. Three weeks later Jodie’s water broke and she was rushed back to Mt. Sinai. At only 26 weeks gestation and less than 650 grams, the Tummers' were told their sons would likely arrive within days and prepared for the worst for Cameron. Thankfully labour did not begin and with the amazing support of Dr. Ryan, the staff at Mt. Sinai and at St. Joseph’s hospital in London and guidance from above by a very special guardian angel, Cameron Cole Gregory and Cole Edward Ryan waited another 8 weeks before they arrived. Without Dr. Ryan and the Fetal Therapy Program they know that they would not have Cameron here with them today.
On February 9, 2009 Amanda and Shawn Lawlor went for a 19wk ultrasound for their second child at the IWK in Halifax. In that ultrasound they found out that not only were they having twins but identical twin girls AND they had stage 3 TTTS. They were transferred to the high-risk pregnancy unit and within an hour they had a package in hand on TTTS and about Mt. Sinai and Dr. Greg Ryan. A few hours later they were on a plane to Toronto. They met with Dr. Ryan very late that night and decided to go ahead with the laser surgery. Two days later it was done and they returned home two days after that. Amanda was very closely followed by her OB until 23wks when her water broke and she was admitted to the hospital. The girls held on until 31wks when they were born, strong and healthy. Mairin Grier weighed 3lbs1oz and Keira Davilyn weighed 2lbs6oz. The girls only required CPAP for one day and were in the NICU for 6-7wks to learn how to feed and grow. Without Dr. Ryan and the wonderful team at Mt. Sinai they know their girls never would have survived and to have such a wonderful outcome is more than they could have ever hoped for. They feel so lucky to have been able to receive the care that they did at Mt. Sinai and will be forever grateful.
Erin Kelly actually came to Dr. Ryan because of her sister. They both had identical twins with TTTS. Her sister recognized the symptoms before Erin's doctors in North Bay did and they were able to push for a referral. When she arrived at Mt Sinai she was surprised by the efficiency and warmth of Dr. Ryan's team. As it turned out that both her sister and Erin had been diagnosed, had the laser surgery and given birth at the exact same time in their pregnancies that were two years apart. Dr. Ryan is the reason her dear Leighanne survived and why she was able to hold Madison even if only for a brief moment. Erin cannot thank Dr. Ryan or his team enough and knows her sister agrees with her in saying Dr. Ryan and his team are a godsend.
When Becky Gilles unborn twins were diagnosed with TTTS, she and her husband were devastated. They immediately travelled to Mount Sinai Hospital in Toronto from Saskatchewan to meet with Dr. Gregory Ryan. After being assessed, Dr. Ryan agreed to perform an intrauterine laser surgery to attempt to save their babies. There were several complications, which would have deterred many Doctors, but Dr. Ryan was willing to attempt surgery. They met with other specialists and were told to prepare for the worst, but Dr. Ryan stayed positive and encouraged them to do so as well. At a time when they needed it most, Dr. Ryan gave them hope and they feel their family is truly blessed. Four months after receiving the surgery, they celebrated the arrival of their twin boys, Mason & Brayden. Against all odds, the boys were born full-term and are happy and healthy nine month olds. Every day, they think of Dr. Greg Ryan and what he has given to them. Words cannot express how much this man has changed Becky's life. "He is an incredible and compassionate Doctor and I feel that the work he is doing for pregnant woman all across the country is so important."
Juli Robinson and her husband Jeremy will never forget June 12, 2007 when during an 18 week ultrasound their identical twin babies were diagnosed with Stage III TTTS. Shock, devastation and fear ran through them, however, they had a glimmer of hope; Dr. Greg Ryan at Mt. Sinai in Toronto. Within 3 hours they were on a plane from Calgary and by 8 am the next morning they were meeting the only person who could give their babies an opportunity to live. Dr. Ryan spent a great deal of time with them that day presenting the surgery and the risks. They appreciated Dr. Ryan's calm, composed nature. On June 14, Dr. Ryan performed laser surgery in utero and 24 hours post surgery an ultrasound revealed what they already knew - their babies were fighters. After what seemed like an endless summer, Juli was induced at 37 weeks and delivered their fighters, Emma and Taylor. Today they are healthy, bouncy, spirited 3 year olds who Juli and Jeremy couldn't imagine life without. "Words cannot express the gratitude we feel towards Dr. Ryan and his gifted team. They are our heros. During the most difficult time of our lives, they managed our TTTS with honesty, professionalism and extreme competence. Put simply - without them and the technology available at Mount Sinai our girls would not be here today."
Our group decided that we wanted to raise funds for Mount Sinai, specifically for the Fetal Medicine Unit headed by Dr. Greg Ryan who performs life saving surgery for TTTS patients. Without Dr. Ryan's help and the wonderful people at Mount Sinai there is little hope for TTTS families in Canada and we wanted to do what we could to show our support. Please take the time to offer your support to Mount Sinai so they can continue to provide the amazing care that they do for people like us and hopefully many more lives can be saved.