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.
Experts from Seattle Children’s Prenatal Diagnosis and Treatment Program will work closely with each other and with you to provide the care you and your twins need before the babies are born and to plan for their needs after birth.
Before birth and in the months soon after, your twins’ healthcare team will gather as much information as they can about their anatomy and 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 talk with you about what your twins’ lives may be like whether the twins are joined or separated. They will help you consider which option is best for your twins.
Some conjoined twins 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 in the first 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.
When separation is planned
Surgery to separate conjoined twins requires detailed planning whenever possible. To prepare for surgery, your twins will need 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 do the separation surgery after 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, tests and other procedures that might be needed to learn about your twins’ bodies or prepare them for separation.
In some cases, conjoined twins need to be separated before they are 4 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.
Often, two complete surgery teams work together very closely to separate twins. This can be important to take care of the complex needs of both twins at the same time while they are being separated and right after. 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 Seattle Children’s healthcare team throughout their twins’ childhood and on into their early adult years.
If you have questions about conjoined twins treatment or prenatal diagnosis, call our General and Thoracic Surgery Department at 206-987-2794, extension 4, or our Prenatal Diagnosis and Treatment Program at 206-987-5629.