This is a story about my daughter and her family, and how TTTS changed our lives forever .
Jennifer and her husband Raymond had two beautiful children, Hailey and Cameron. He worked days and she worked nights so each could spend time with the children and provide them with a nice home. Jennifer wanted another child to complete their family. Hearing her wish, on their next anniversary God answered her prayer and she conceived new life.
Three months passed and all seemed well. Then to their surprise they found out there were two babies bouncing and tumbling around inside Mum’s tum. Jennifer mentioned that she was more sore and tired than with her previous children, and being on her feet all night at her job became challenging to say the least.. But being a trooper, she stuck to her guns and vowed she’d work to the end as before.
At five months there was a significant change — she’d been so busy that up till now she’d actually lost weight but a 13 pound weight gain in one week was way off the chart.
The family doctor sent her to a specialist who discovered she had identical boys and a condition that only occurs with identicals, Twin to Twin Transfusion Syndrome. With amnio he drained a litre of fluid and sent her home with a page of instruction on her condition (TTTS). No, he said, there was no need to stay off work, and taking the kids to Disneyland as planned in a couple of days too, was all well and dandy with the gentle old specialist that day.
With paper in hand, she shared the news with us and we dove for the Internet for more on her syndrome. We soon discovered all was not so good, the specialist was wrong. If she did as he said with work and Disneyland, she was 100% assured of losing the twins. We discovered a surgery on the web and contacted them at 1:30 AM . At 3:05 AM our first angel, Dr. Julian DeLia, emailed back to inform us she must be flat on her back and ready to fly out for surgery in days if she wanted her babies to make it at all.
He phoned 3 hours later to clarify his point, and to also advise a heavy caloric diet on top. “Fatten them up as fast as you can, they’ll be coming early and the more weight the better their chances.” He said.
Insurance a concern and referral required, we snuck past the sweet old specialist and went right to his boss with our reams of paper presenting our case.
He smiled at our tenacity, our second angel for sure, Dr. V Anthony Catanzarite said we did right. He drained 4 more litres and put her on a plane to Florida and into the hands of angel number three, Dr. Ruben Quintero. Five days in his care, in-womb laser surgery to boot, back she came to San Diego with renewed hope. At 24 weeks Dr. Catanzarite informed us that the big guy was fine, but little guy’s heart was fading away. He prepared us to accept that at next visit he expected to find only live baby for the rest of her term.
She looked in his eyes, then into mine. She stroked her tummy and said then and there, “Kyle you are strong, help Connor live. Connor you fight, we’re all praying for you.” The good doctor said he sees miracles every day, prayers could not hurt, but prepare for the worst. With tears in my eyes, I bent down and said to her tummy up close, “Fight Connor, fight Kyle, we’re all praying for you.”
Back at the office that day and ongoing, I asked all I talked to, to pray for Connor and Kyle. Each day would go by with tummy kisses galore, Raymond and Hailey and Cameron, telling their babies to fight they were praying for them and making their home ready. At 25 weeks Dr. Catanzarite listened good. He listened again and again then exclaimed, “You’ve done it by God, his heart is right there, stronger I think we’ll get an expert to check.”
Angel four, chief of paediatric cardiac surgery, travels fast through a tunnel between the place we are at and his rounds at Children’s Hospital. He and his team listen and view for hours it seems then he says, “We have good news! The little guy had a heart attack”.
We look at him as if he is crazy, it seems, a heart attack good news? How can this be? He quickly explains, “It happened back when . . . and now little Connor is simply trying to mend. There is no better place to have a heart attack than in the womb. And since it is the best place to heal as well, check mommy in, keep her flat on her back, feed her bunches to fatten the babies up, and keep them inside for as long as you can.”
Eight weeks later a 100 lb larger mommy delivers our boys to much noon time celebration. By 11:30 PM, panic comes back, both are fighting to survive and Connor is taken away through the tunnel for last chance help.
We pray and we pray, they are fighting so hard. All the PICU angels and our boys who refuse to quit life. Kyle is now stable, Connor can’t get strong. Every time they try to bring him back to his brother, he crashes in the tunnel and they have to rush him back to the machines.
We’ve come to accept this new way of life of bouncing between PICU’s when angel number 5, Jim Spradlin, walks in my office and offers a gift of church prayer. Women, he says, of his church make these quilts that they tie prayer knots in. He’d like to order one for each of the boys if that was ok? He wrote down their names, and what they had wrong, said they’d pray for the twins and went back to work.
That was Thursday and Connor crashed that night and Friday again. The doctors said it would be sometime before they tried to move him again if at all. On Sunday around 11:00 AM, angel five calls me at home to my surprise. He says Kyle and Connor’s quilts are ready if I’d like to pick them up. Being catholic and thinking in terms of my church where a candle is lit or a mass can be said for a person in need . . . somewhat confused I respond, “Oh how sweet you had a knot tied for each of them today?”
He replies, “No each has a quilt of their own with many prayer knots having been tied for each today.” I repeat back what he said and then add, “Oh my God, I’ll be right there, I had no idea.”
To his son’s basketball practice I go. Jim and his little girl walk with me to their truck. She takes out the quilts, each beautiful, unique and handmade. In her tiny shy voice she looks in my eyes and with the unfaltering faith of a child . . . explains that today at church everybody tied a knot for each of the boys and each person said a prayer for each baby’s healing as each person tied their knot in that baby’s quilt.
As she handed me each quilt she says, “One more for each, there is no limit on the number of prayers and knots so you can keep doing it too.”
Taking hold of a knot, as I stroke the quilts, she closes her eyes and with her delicate little hands ties another knot tight. First in Connor’s, then in Kyle’s. Choked up with tears, I can hardly speak, I thank them and rush off to Kyle’s hospital where Jennifer is to be. They’ve got me doing it too . . . at each light and place to stop, I too tie a knot and pray for my grandbabies. I let the nurses know I’m out in reception and sit down to wait. Out comes my daughter, so all a glow. She has no idea what I have so I wonder what’s causing her joy. She says, “Oh my God, Mom Connor is here. All of a sudden he got so much better that they chanced the move. Not only did he make it, but’ through the tears she adds . . . ‘the heart surgeon just finished examining him and his heart is fully healed. The doctor said, ‘His little heart looks like he never had a heart attack.’”
I pick up the quilts and tell her the story of the prayer knots and she says, “Mom his turn around happened at the time those people were praying for him.”
Today, eight+ months later, we have two. Kyle big and strong. Connor little and frail. Both full of smiles, and filled with laughter and joy for life. Thanks to Five Angels and the many prayers that reached up to Heaven and God’s ears . . . we have this, our TTTS story to share.
May our story of truth and the miracles so beyond our understanding bring joy to your heart.
On March 13, 2001, Jennifer Joyce gave birth to Kyle and Connor Joyce via C-section at Mary Birch Hospital, San Diego. Sometime in the future, when Connor is bigger and stronger, he will receive his Mummy’s kidney (if fully compatible), followed by Daddy’s (since all’s blood type’s seem right), and maybe one from Kyle when he reaches age of consent. We’ve known from their births that Connor would eventually need new kidneys. We also have learned that due to his age, it is highly unlikely that a single transplant will suffice for his lifetime. All in the family are lined up and prepared, if ours is a match it will be our willing gift to him. Transplants aren’t easy. We realize we have a long road ahead so please keep little Connor and Kyle and their family in your prayers. These little guys are proof . . . miracles do happen!