My Twins Were Diagnosed with TTTS (Twin-to-Twin Transfusion Syndrome)
Medically reviewed by Dr. Michael Okonkwo, MD, FAAP · Board-Certified Neonatologist
Content reviewed against published CHOP, NIH, TTTS Foundation guidelines
Last reviewed:
If your baby has been diagnosed with or you suspect my twins were diagnosed with ttts (twin-to-twin transfusion syndrome), here is what the evidence says.
The short answer
Twin-to-twin transfusion syndrome (TTTS) is a serious condition affecting identical twins who share a placenta (monochorionic twins). Abnormal blood vessel connections in the placenta cause unequal blood flow between the twins — one (the donor) gives too much blood, and the other (the recipient) receives too much. TTTS is staged I through V (Quintero staging). Without treatment, severe TTTS can be life-threatening, but fetoscopic laser surgery has dramatically improved outcomes. Many TTTS survivors develop normally, though close follow-up is recommended.
Key takeaways
- Twin-to-twin transfusion syndrome (TTTS) is a serious condition affecting identical twins who share a placenta (monochorionic twins). Abnormal blood vessel connections in the placenta cause unequal blood flow between the twins — one (the donor) gives too much blood, and the other (the recipient) receives too much. TTTS is staged I through V (Quintero staging). Without treatment, severe TTTS can be life-threatening, but fetoscopic laser surgery has dramatically improved outcomes. Many TTTS survivors develop normally, though close follow-up is recommended.
- Usually normal when: Your TTTS twins received laser treatment and are growing and developing well
- Call your doctor if: Either twin has seizures, sudden changes in behavior, or signs of neurological problems — seek emergency medical evaluation
- Varies by age — see the age-by-age breakdown below
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What Parents Should Know
According to CHOP, NIH, TTTS Foundation guidelines, twin-to-twin transfusion syndrome (TTTS) is a serious condition affecting identical twins who share a placenta (monochorionic twins). Abnormal blood vessel connections in the placenta cause unequal blood flow between the twins — one (the donor) gives too much blood, and the other (the recipient) receives too much. TTTS is staged I through V (Quintero staging). Without treatment, severe TTTS can be life-threatening, but fetoscopic laser surgery has dramatically improved outcomes. Many TTTS survivors develop normally, though close follow-up is recommended. At Prenatal diagnosis and treatment, tTTS is typically diagnosed during pregnancy via ultrasound showing discrepant amniotic fluid levels — too much around the recipient twin and too little around the donor. Fetoscopic laser ablation of the connecting blood vessels is the primary treatment for stage II and above. The procedure is performed at specialized fetal surgery centers. After treatment, close monitoring continues for the remainder of pregnancy. The emotional toll of a TTTS diagnosis during pregnancy is immense — connecting with TTTS support organizations can help. It is generally considered normal when your TTTS twins received laser treatment and are growing and developing well. However, you should contact your pediatrician promptly if either twin has seizures, sudden changes in behavior, or signs of neurological problems — seek emergency medical evaluation.
Normal vs. Concerning
By Age
What to expect by age
Prenatal diagnosis and treatment
TTTS is typically diagnosed during pregnancy via ultrasound showing discrepant amniotic fluid levels — too much around the recipient twin and too little around the donor. Fetoscopic laser ablation of the connecting blood vessels is the primary treatment for stage II and above. The procedure is performed at specialized fetal surgery centers. After treatment, close monitoring continues for the remainder of pregnancy. The emotional toll of a TTTS diagnosis during pregnancy is immense — connecting with TTTS support organizations can help.
NICU and newborn period
TTTS twins are often born prematurely and may need NICU care. The donor twin may be smaller and anemic, while the recipient twin may have cardiovascular issues from fluid overload. Both twins should be evaluated for complications specific to TTTS, including cardiac function, brain imaging, and kidney function. If laser surgery was performed during pregnancy, outcomes are generally better, but monitoring remains important.
0-12 months corrected age
Both twins should receive developmental follow-up, as TTTS survivors have a somewhat increased risk of neurological complications, particularly if the syndrome was severe or if one twin was lost. Cardiac follow-up for the recipient twin and monitoring for anemia or growth issues in the donor twin may be recommended. Many TTTS survivors develop normally, especially when the condition was treated early.
1 year+ corrected age
Long-term studies show that the majority of TTTS survivors who received laser treatment have normal neurodevelopmental outcomes. However, annual developmental and cardiac screening is recommended through early childhood. If you lost one twin to TTTS, the grief is profound and valid — you are simultaneously mourning one child while celebrating the survivor. Support groups for TTTS families can be invaluable.
What to Tell Your Pediatrician
- Describe when you first noticed my twins were diagnosed with ttts (twin-to-twin transfusion syndrome) and how it has changed over time.
- Note your baby's current age and which age-specific patterns you are seeing.
- Mention if either twin is not meeting developmental milestones or seems to be falling behind.
- Mention if the recipient twin has ongoing cardiac concerns or the donor twin has ongoing growth issues.
- Let your doctor know if you have noticed any related concerns, such as changes in feeding, sleep, or movement patterns.
- Bring a list of any questions or observations you want to discuss at the appointment.
What Should You Do?
When to take action
- Your TTTS twins received laser treatment and are growing and developing well
- There are size differences between your twins but both are following their own growth curves
- Your twins are meeting developmental milestones, though one may be slightly ahead of the other
- Either twin is not meeting developmental milestones or seems to be falling behind
- The recipient twin has ongoing cardiac concerns or the donor twin has ongoing growth issues
- You are struggling emotionally with the TTTS experience, especially if one twin was lost
- You have questions about future pregnancy risks or genetic counseling
- Either twin has seizures, sudden changes in behavior, or signs of neurological problems — seek emergency medical evaluation
- The recipient twin shows signs of heart failure (difficulty breathing, poor feeding, excessive sweating with feeds) — contact your pediatric cardiologist urgently
What You Can Do at Home
- Keep track of when you notice my twins were diagnosed with ttts (twin-to-twin transfusion syndrome) — noting the time of day, duration, and any triggers can help your pediatrician.
- Remember that your TTTS twins received laser treatment and are growing and developing well — this is generally within the range of normal.
- At Prenatal diagnosis and treatment, focus on observation rather than intervention unless your pediatrician advises otherwise.
- Follow any care instructions from your pediatrician. Keep a written log of symptoms to bring to appointments.
- While monitoring at home, seek immediate care if either twin has seizures, sudden changes in behavior, or signs of neurological problems — seek emergency medical evaluation.
Related Conditions
NICU Parent Trauma and Stress
Having a baby in the NICU is one of the most stressful experiences a parent can face. Research shows that up to 70% of NICU parents experience clinically significant anxiety or depression, and a substantial number develop PTSD symptoms. The helplessness, fear, separation from your baby, and disruption of expected parenthood are legitimately traumatic. Your pain is real and you deserve support.
Should I Use Adjusted Age for My Preemie's Milestones?
Yes — for premature babies, developmental milestones should be assessed using adjusted (corrected) age, not chronological age, until at least 2 years of age. Adjusted age is calculated by subtracting the number of weeks your baby was born early from their actual age. For example, a 6-month-old born 2 months early would have an adjusted age of 4 months, and should be assessed against 4-month milestones. Most pediatricians use adjusted age for developmental assessment through age 2-3, and for growth charts through age 2.
My Baby Has a Brain Bleed (Intraventricular Hemorrhage)
Intraventricular hemorrhage (IVH) is bleeding into or around the brain's ventricles, most common in premature babies born before 32 weeks. It is graded 1 through 4: grades 1-2 are mild and usually resolve without lasting effects, while grades 3-4 are more serious and may lead to hydrocephalus, developmental delays, or cerebral palsy. Hearing that your baby has a brain bleed is terrifying, but it is important to know that even with higher grades, outcomes vary and many children do well with appropriate follow-up and early intervention.
Related Resources
Frequently asked questions
Is my twins were diagnosed with ttts (twin-to-twin transfusion syndrome) normal?
When should I call the doctor about my twins were diagnosed with ttts (twin-to-twin transfusion syndrome)?
When is my twins were diagnosed with ttts (twin-to-twin transfusion syndrome) normal?
What causes my twins were diagnosed with ttts (twin-to-twin transfusion syndrome)?
What should I mention to my pediatrician about my twins were diagnosed with ttts (twin-to-twin transfusion syndrome)?
Is my twins were diagnosed with ttts (twin-to-twin transfusion syndrome) normal at Prenatal diagnosis and treatment?
Is my twins were diagnosed with ttts (twin-to-twin transfusion syndrome) normal at NICU and newborn period?
Should I go to the ER for my twins were diagnosed with ttts (twin-to-twin transfusion syndrome)?
Does my twins were diagnosed with ttts (twin-to-twin transfusion syndrome) go away on its own?
References
- [1]Children's Hospital of Philadelphia. Twin-to-Twin Transfusion Syndrome. CHOP
- [2]National Library of Medicine. Twin-to-Twin Transfusion Syndrome: Outcomes and Long-Term Follow-Up. Frontiers in Pediatrics, 2022. NIH
- [3]The Twin to Twin Transfusion Syndrome Foundation. About TTTS. TTTS Foundation
Doctor Visit Checklist
Bring this checklist to your next pediatrician visit to discuss My Twins Were Diagnosed with TTTS (Twin-to-Twin Transfusion Syndrome).
Things to mention
- Describe when you first noticed my twins were diagnosed with ttts (twin-to-twin transfusion syndrome) and how it has changed over time.
- Note your baby's current age and which age-specific patterns you are seeing.
- Mention if either twin is not meeting developmental milestones or seems to be falling behind.
- Mention if the recipient twin has ongoing cardiac concerns or the donor twin has ongoing growth issues.
- Let your doctor know if you have noticed any related concerns, such as changes in feeding, sleep, or movement patterns.
- Bring a list of any questions or observations you want to discuss at the appointment.
Observations to share
- Either twin is not meeting developmental milestones or seems to be falling behind
- The recipient twin has ongoing cardiac concerns or the donor twin has ongoing growth issues
- You are struggling emotionally with the TTTS experience, especially if one twin was lost
Urgent signs to report immediately
- Either twin has seizures, sudden changes in behavior, or signs of neurological problems — seek emergency medical evaluation
- The recipient twin shows signs of heart failure (difficulty breathing, poor feeding, excessive sweating with feeds) — contact your pediatric cardiologist urgently
My notes
From ismybabyalright.com — free, evidence-based baby health guides
All content follows our editorial policy and is reviewed against published clinical guidelines.
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Related Resources
Bottom line
Most cases of my twins were diagnosed with ttts (twin-to-twin transfusion syndrome) are normal. Talk to your pediatrician if either twin has seizures, sudden changes in behavior, or signs of neurological problems — seek emergency medical evaluation.
Trust your instincts. If something feels wrong, reach out to your pediatrician. Worrying about your baby means you care — that is a good thing.
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NICU Parent Trauma and Stress
Having a baby in the NICU is one of the most stressful experiences a parent can face. Research shows that up to 70% of NICU parents experience clinically significant anxiety or depression, and a substantial number develop PTSD symptoms. The helplessness, fear, separation from your baby, and disruption of expected parenthood are legitimately traumatic. Your pain is real and you deserve support.
Should I Use Adjusted Age for My Preemie's Milestones?
Yes — for premature babies, developmental milestones should be assessed using adjusted (corrected) age, not chronological age, until at least 2 years of age. Adjusted age is calculated by subtracting the number of weeks your baby was born early from their actual age. For example, a 6-month-old born 2 months early would have an adjusted age of 4 months, and should be assessed against 4-month milestones. Most pediatricians use adjusted age for developmental assessment through age 2-3, and for growth charts through age 2.
My Baby Has a Brain Bleed (Intraventricular Hemorrhage)
Intraventricular hemorrhage (IVH) is bleeding into or around the brain's ventricles, most common in premature babies born before 32 weeks. It is graded 1 through 4: grades 1-2 are mild and usually resolve without lasting effects, while grades 3-4 are more serious and may lead to hydrocephalus, developmental delays, or cerebral palsy. Hearing that your baby has a brain bleed is terrifying, but it is important to know that even with higher grades, outcomes vary and many children do well with appropriate follow-up and early intervention.
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