Names in this story have been changed to protect the privacy of the family involved. Selective Reduction is a difficult decision to make. It is the last chance technique used to save one or more babies’ lives in multiple pregnancies. Twinfo respects these families’ decisions and offers this story from the mother’s perspective in the hope that it brings some understanding to the decisions families who take this route take.
When Sarah and her partner discovered they were having identical twins, they were overjoyed. Two babies to complete their family was a miracle.
At 12 weeks, it was discovered that baby B was measuring smaller and had a velamentous cord insertion. All the other tests came back fine, so it was simply a matter of watching and monitoring closely for any complications. Sarah knew all the questions to ask. She knew that her local clinic would refer her to a highly esteemed major center close by if anything like TTTS, TAPS, or SIUGR came into play.
When Things Start To Go Wrong
At 18 weeks, Sarah’s routine check revealed some concerns. Baby A had too much fluid, and Baby B’s growth was not as good as it should be. The family was immediately referred to the central hospital for a second opinion. It was confirmed that Baby B had type 1 SIUGR.
At this stage, a discussion was had about all the options available for continuing the pregnancy, including a difficult conversation about reducing the pregnancy down to just one baby. At this stage, the decision was made to watch and wait, as both babies were stable.
Watching and waiting was difficult for Sarah. There were never clear answers. The word stable became a mantra for her – but the emotional toll of week by week, no changes, or no real solutions took its toll.
Reaching Out
Sarah connected with several online groups about her story and reached out to several advocates and experts about her case. There were mixed opinions, but many spoke of positive outcomes, and this gave her hope.
Coming from a research background, she also invested time into reading research and educating herself on all possible outcomes. All the options were discussed at each appointment, and frustratingly, watch and wait was still the most viable option.
Sarah did feel she understood her situation and that her team was willing to work with her and her decisions. Although the feeling of a lack of control was there because her case was so precarious, it was under control.
A Turn For The Worst
At her 23 week appointment, things began to deteriorate. Baby B’s growth had slowed, and her cord flow had switched to reversed, meaning that she was showing signs of dying in utero. Unfortunately, this meant that decisions needed to be made, and fast. The shared placenta and the fact that the pregnancy hadn’t reached viability made the situation dire. If baby B died, then Baby A was at risk of death or permanent injury as well.
During a 5 hour long consultation, the option of laser surgery was raised, as well as continuing to watch and wait. However, Baby B’s situation was difficult, and weighty decisions needed to be made.
Sarah was able to ask questions, bring forward research, and ask questions. Her team went through all the possible outcomes and even supported her asking so many questions. She saw a counsellor and felt supported the whole time. There was no pressure, only answers, and support.
Selective Reduction: Difficult Decisions
At 23 weeks, 2 days, Sarah said goodbye to Baby B. Cord occlusion was performed. She died hearing only loving words from her parents and knowing only safety, warmth, and love.
Sarah was at peace with her decision because she knew deep down it was the one that could bring the family the most hope. They found peace through the heartbreak and sadness, knowing that their team supported them throughout the journey. All the decisions were made based on evidence and supported by facts.
Testing revealed that baby B had sustained significant brain injury before the procedure was performed and that her chances of survival were slim. The family took comfort in knowing that this was the best decision for them.
The Next Chapter
Baby A flourished and grew and was delivered safely and well. Sarah also spent time with Baby B after birth, giving her love and kisses and saying their farewells. This was an essential part of the journey for the family. The pathology reports confirmed that the placental sharing and cord insertions were the cause of her issues. Sarah felt that this finally put her at peace with her decisions.
Selective Reduction: Things To Consider
Selective Reduction is a difficult decision to make. Medical teams use it as a last resort, and it is a tough choice.
Many outsiders don’t realise the depth of the dilemma that families in this situation are in. It is a difficult decision that is made with a lot of support and resources given by professionals. Families often feel judged and shamed because they have had to go through this trauma and make decisions that no families think they will ever have to make.
Society looks at twins with rose coloured glasses, and there are often heartbreaking consequences of multiple births. There are many complications, and there are difficult situations that families find themselves in due to this.
In Sarah’s situation, the family knew that there were potentially life-threatening and severe long-term consequences for baby B if she survived. There was also a risk of extreme prematurity, putting both babies at risk. If baby B died in utero, there was a high chance her sister would die or have serious consequences.
The decision is difficult, but the right team and the right resources can help. It’s essential to support these families and not pass judgment on them. They have made difficult choices, and it’s often not about choosing life but choosing the quality of life.
Sarah’s surviving twin will know she had a sister and that she was loved very much. Her family has made the decision to tell her more as she grows older and can understand. They are very much at peace with their decision and know that the support and love they have received from their family and friends have helped them grow.
Selective Reduction is a difficult choice that is stigmatised by a lack of understanding and knowledge. It’s essential to open conversations about it.
For families who have lost a twin due to selective Reduction, a judgment-free organisation exists called The Center for Loss In Multiple Birth. They have resources available to you and can offer comfort and support for your decisions. The TTTS Grief Support Group also has a closed group specifically for families in this situation. Contact their admins for more information.
This story is written with compassion and dedicated to Baby B, and Sarah who shared her story with me.
Stephanie Ernst is a freelance writer and self-proclaimed TAPS Nerd. She’s the TAPS Support Foundation‘s founder and spends her free time raising awareness of the issues facing parents of twins. Her own experience with Twin Anemia Polycythemia Sequence (TAPS) and feeling the isolation of this diagnosis drives her determination to change screening protocols worldwide, support twin research, and raise the profile of multiples’ rights.