There’s a unique, unmistakable weight in the silence after an ultrasound reveals a problem. It’s so heavy you can’t breathe or cry. The weight is filled with shock, fear, and deep sadness. With our two year old daughter side, my husband and I felt this weight in our twin pregnancy at our routine bi-monthly ultrasound. We were 21 weeks along and we were told our boys had Twin to Twin Transfusion Syndrome (TTTS). The boys shared a placenta and blood vessels had grown between the babies and were transfusing blood from “Baby A” to “Baby B”. “A” would now be known as the donor and “B” the recipient. The donor had given so much blood that he was dehydrated and was not urinating. This resulted in a very small pocket of amniotic fluid. His ultrasound images showed nothing more than a blob of unrecognizable bright white bone. The weight of his brother and my body rested almost entirely on his bones. Conversely, the recipient had so much blood in his system that his heart was failing and he was urinating profusely. The perinatalogist read his behavior as a sign of his health and amazingly he had wonderful movement, with frequent touching of his crammed brother lying in just on the other side of the membrane that separated them.
I wanted so desperately to help them right away. Fortunately our perinatalogist recommended we consider Fetoscopic Laser Ablation surgery. It was an experimental procedure that would require a next day flight to Seattle. Taking a chance with the procedure meant we could not help ease the donor’s pressure with amnio-reduction therapy. It was a big decision to make very quickly. While my husband and I read the New England Journal of Medicine’s report on the procedure in the ultrasound room, our perinatalogist made arrangements for our procedure in Seattle. We quickly saw that the procedure was the best chance for both our boys to survive the disease.
That afternoon, five hours after diagnosis and less than twenty-four hours until our flight, I had a revelation. I felt that if our boys were destined to live a short life, never knowing the world outside the womb, I wanted them to feel love, know peace, hear beautiful music, and experience my comforting presence. While the grandparents gathered to help, while my husband miraculously planned our travel and logisitcs of our stay in Seattle, I rested with my daughter and visualized a calm glowing light healing my boys and myself. I talked to them both out loud and in my mind. I told them I knew they hurt but we were going to be ok. I told them to hold on just a bit longer. I had my daughter cast a shadow of her hand in the sunlight on my naked and fast growing tummy, so that they could see their sister.
A four hour ultrasound in Seattle a little more than two hours after we landed the next day revealed how much healing needed to take place. The boys were at Stage 3, with the 5th stage being mortality. The recipient’s heart was failing and the doctor in Seattle (Dr. Martin Walker) gave him three more days to live. The donor’s brain scans did not show any signs of anemia, but Dr. Walker predicted his death a few days after his brothers. The good news was that my placenta was attached to the back of my womb, a key factor that made us eligible for the Laser Ablation surgery the next day.
Dr. Walker performed the operation. He believes in the connection between parents and unborn babies and wanted us to see our babies during the procedure. In a rare case my husband scrubbed up and was allowed in the general OR. I was given an epidural and was a conscience member of the procedure. Through a two millimeter incision into the recipient’s side, Dr. Walker first inserted an endoscope, called a “fetoscope” for this procedure. He traced and counted the twenty-six blood vessels that ran across the placenta connecting the boys. We watched on a color screen, occasionally catching “NOVA” like glimpses of our recipient baby boy. Dr. Walker then slid a laser alongside the fetoscope and zapped one place on each blood vessel. He went back and counted the scarred white zapped sites to ensure no blood vessels were missed. Finally he withdrew four liters of excess amniotic fluid from the recipient’s side. My womb instantly shrunk from measuring forty-eight weeks to measuring twenty- six weeks. I started going into preterm labor during recovery and was put on terbutaline from that moment until the end of the pregnancy at thirty-six weeks. The boys used my positive energy and healing visualizations to fully recover from the disease in the twenty-four hours that followed the procedure. Confirmation that the operation was successful came with a final ultrasound a few hours before our flight home. Relief and almost disbelief spread over us as we saw two boys with two strong heartbeats and just the right amount of amniotic fluid around each.
My boys are now 6 years old. They show no long term side effects from their disease. Many miracles occurred that allowed our boys to survive. From our OB’s early referral to a perinatalogist who ended up catching the TTTS just in time, to the expert artistry of Dr. Walker in Seattle. Prayer circles attached to prayer circles sent healing thoughts, strength, and prayers to us. A peaceful and angelic elderly woman even came up to us right after we got off the plane at DIA and said she would be praying for us through the rest of the pregnancy. In just a few days it felt like all the positive forces of the universe came together to help my twin boys survive. We are very grateful. I treasure the connection that formed between the boys and me on our journey through TTTS. It was a connection forged through healing light and medicinal lasers that is still strong today.
Jennifer Smith-Daigle is a stay-at-home mother of a third grade daughter and twin kindergarten boys. She and her boys are survivors of Twin to Twin Transfusion Syndrome, being some of the first 200 people in the United States to be cured by Fetoscopic Laser Ablation surgery. Jennifer’s life before kids included world travel, historic preservation, and archaeology digs. When she’s not busy with a house full of kids and enough mammals to constitute a small zoo, Jennifer finds freedom in freelance writing, martial arts, and gardening.