Conjoined Twins Treatment Options
The treatment that conjoined twins may need depends on the health of each twin and where and how they are joined.
Creating a treatment plan
The connection between the twins’ bodies may range from fairly simple to very complex. Both children may have all the organs and other structures they need, or they may share vital organs, like their heart, or other structures. Their bodies may be able to support both their lives, or it may be hard for one or both to survive because of health problems. So treatment for each set of twins is unique.
Before birth and in the months soon after birth, your twins’ healthcare team will gather as much information as they can about your children’s anatomy, or structure, and their function, or how well their bodies work. The team will use this information to create a detailed treatment plan. The main goal is to give both children the best chance for a good quality life whenever possible.
Deciding about separation surgery
Your twins’ treatment plan may or may not include surgery to separate them. Separation surgery may give the best or only chance of survival for one or both twins. However, in some cases, staying joined gives the twins their best or only chance to live.
Your healthcare team will also talk with you about what your twins’ lives may be like whether they are joined or separated. They will help you consider which option is best for your twins.
Some conjoined twins continue to live for days, weeks, months or years — even into adulthood — still physically connected to each other. It may be hard for many of us to imagine what this might be like or how this could be a good life. For most of us, having a distinct, separate body is basic to our experience as people; it’s our “normal.” For conjoined twins, being connected to their sibling is “normal.” Some conjoined twins have happy, healthy, full lives by staying connected. For some twins, separation surgery is too difficult. So some stay connected because it’s the only real option.
Some conjoined twins do have surgery to be separated. Usually this takes place in the first 6 to 12 months of life. This may be the best option for both children’s physical health, while also giving them the chance to have independent bodies and lives.
Sometimes separation surgery is the best option because the twins’ shared organs cannot support both of them. Or it may be the best option because one twin is unlikely to survive and separation is the only way to give the other twin a chance to live.
In some cases, conjoined twins need to be separated before they are 6 months old. Sometimes they need to be separated right after they are born because of a health emergency or an urgent problem that cannot wait.
When separation is planned
Surgery to separate conjoined twins requires detailed planning whenever possible. To prepare for surgery, your twins will have a large team of healthcare providers who are experts in many different types of care. They will work together to plan the steps and timing of the surgery and the care your children will need before and after. One doctor will oversee the team and coordinate all parts of the plan.
In most cases, doctors will wait to do the separation surgery until your twins are at least 4 months old. This gives their bodies a chance to grow so it’s easier for doctors to do the surgery and easier for the twins to withstand the surgery. This also allows time for the many imaging studies and tests needed to learn about your twins’ bodies.
Each twin will probably have his or her own complete team for the surgery. Once your twins are separated, each may need more surgery to correct some of the anatomic (structural) problems they may have.
Your twins will need long-term follow-up visits to check their growth and development whether they stay connected or are separated. Most will need surgeries or other types of treatment for health issues that arise over time. Families of conjoined twins can expect to keep a close relationship with the children’s healthcare team throughout their childhood.