Background
Research question
Methods
Data collection
Analyses
Results
N | % | ||
---|---|---|---|
Author of story | |||
Mother | 36 | 80.0 | |
Father | 7 | 15.6 | |
Maternal Grandmother | 2 | 4.4 | |
Pregnancy Type | |||
Twins | 43 | 95.6 | |
Triplets | 2 | 4.4 | |
Year of pregnancy (median, range) | 2006 (1998–2011) | ||
Diagnosed after birth | 2 | 4.4 | |
Weeks at Diagnosis (mean, sd) | 18.6 (3.2) | ||
Treatments | |||
Nutritional Supplementation | 3 | 6.7 | |
Amnioreductiona
| 12 | 26.7 | |
Surgical | |||
Cerclage | 1 | 2.2 | |
Septostomy | 1 | 2.2 | |
Fetoscopic selective laser ablation surgery | 26 | 57.8 | |
Selective Reduction | 2 | 4.4 | |
Immediate delivery | 3 | 6.7 | |
Wait and see until viability | 1 | 2.2 | |
Weeks at birth (mean, sd) | |||
Two plus live births | 31 (3.6) | ||
At least one live birth | 30.9 (3.9) | ||
No live births | 24.0 (5.7) | ||
Outcomes | |||
Live births | 71 | 77.2 | |
Stillborn | 21 | 22.8 | |
Survivors | 66 | 71.7 | |
Outcomes by familyb
| |||
Two survivors | 30 | 66.7 | |
One survivor | 11 | 24.4 | |
No survivor | 4 | 8.9 | |
NICU stay by family (at least 1 live birth) | |||
Yes | 31 | 75.6 | |
No | 6 | 14.6 | |
Missing | 4 | 9.8 | |
Serious complication while in NICU by family | |||
Yes | 12 | 38.7 | |
No | 19 | 61.3 |
Early pregnancy experiences
It’s Twins!
Mother’s/Bodily intuition
No time to act
Diagnostic experiences
Seeking information
Making decisions
Our doctors wanted us to make a decision. Through our conversations with [specialist] and reading the literature, we gained the knowledge to help us feel as though we had some control… We felt torn as we were being persuaded towards surgery…We went home praying for guidance.
I contacted a doctor in Los Angeles for a second opinion. He admitted that laser surgery would most likely result in the death of both boys. My ray of hope turned into devastation. My husband and I discussed and prayed for help in this difficult decision, a decision that no parent should ever have to make. I questioned everything…we finally decided that we couldn’t lose both boys and that if our only option was to save one or lose both we would have to save the one…I was able to see Javier1 on the sonogram before the procedure. He wasn’t moving very much, but I saw his little heart beating. I begged for his forgiveness at what we were about to do.
Interventions
Before the ultrasound I was very, very scared. And everything that I had feared came back ten fold. If this surgery didn’t work, what else did we have. The ultrasound was underway and right away there was our Gavin’s heartbeat, I started to cry. Then with the grace of God our little Tyler’s heart was beating away and God Bless his little bladder was visible!!
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 over to Children’s Hospital 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 [sic] going to be keeping me uncomfortable for the next 13 weeks. Then 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 TTTS has reversed. Our original donor Tyler was now our recipient and Gavin being the original recipient was now the donor. I could not believe it. We were past the point for another surgery and we were not at the point for the babies to be viable. What were we supposed to do now. At this point I was so defeated I didn’t know what to do.
Wednesday was the most difficult day of my life, waiting for a call to indicate that my insurance company had approved the consultation and surgery. Finally the call came late Wednesday afternoon, and we were set for our consultation the next morning. I don’t think I slept much that night. Knowing how quickly TTTS can progress, I wondered if the babies were even still alive?
Variable outcomes
When I walked into the NICU, I immediately saw that his stomach was blown up like a balloon. He just lay there, motionless. I was shown X-rays of little gas bubbles in his intestine. Someone said something about NEC--Necrotizing Encroloitis [sic]. Yet another term I could place hatred on.
Two survivors
“I know the feelings of dread, panic, agony of the waiting period. The just NOT knowing from day to day, month to month how things will turn out.”
One survivor
Everything seemed to be going great until they told us that he had developed a grade 4 brain hemorrhage. They said that with that type of hemorrhage, there was no chance at him surviving. We were given a decision to make, pull the life support or continue to keep it going. We were asked to go home and sleep on the decision before we made it. We went back on Friday morning. We were prepared to make our decision and pull all life support.
When they did the ultrasound the tech looked at me and said Beth, Grace has no heartbeat. All I could say was NO! I was in shock. No emotion. No tears. Then she went to get the Doctor. As soon as she left it hit me. I lost my little girl Grace. I screamed and cried. I could not believe all that we had done and everything looked good the day before.
Then they delivered Grace (stillborn). In recovery we were able to spend time with Grace. She was beautiful… She had such long lashes and such tiny hands. I cried as I held her… We spent about 2–3 h with her not knowing how our other baby girl was doing in NICU. I didn’t want to let go. I was devastated. I had such mixed emotions, I wasn’t sure if I was ready to see her. Finally I went to see her, OH MY she was so tiny.
No survivors
I felt like a zombie, walking around my house. I would feel my stomach, it would be so flat and I would just break down. My husband comforted me in every way that he could. I knew though that he was grieving too. I tried to resume life as normally possible, but it was impossible. I got a job, and my husband went back to work. Then things spiraled down. We were late for work every day. I was on the verge of getting fired. I always asked myself WHY?? WHY ME?? I stopped cleaning, taking care of myself, working out, cooking dinner. We were sad all the time, just feeling sorry for ourselves and pissed off at whoever didn’t feel sorry for us as well. We lost friends and didn’t make new ones.
I would not have either of them to bring home. All I would have to bring home was a terrible feeling of emptiness inside. I still have a lot of pain, anger and sadness inside me. My husband and I bought our own grave sites and the girls are buried at the foot of my grave. I visit them frequently, it gives me some peace.