Trisomy Care Collaborative

Contact Our Team 312.227.6833 Email Our Team TCC@luriechildrens.org

The Trisomy Care Collective (TCC) is a multidisciplinary group of clinicians – which means providers from many different specialties have come together to create this group. Our team includes members from Cardiology, Neonatology, Neurology, Otolaryngology, Pediatric Surgery, Cardiovascular Surgery, Palliative Care, Maternal-Fetal Medicine, Nutrition, Genetics, Nursing, and Social Work.

We know every patient and family is unique. Some families facing these genetic diagnoses will choose intensive in-hospital care, and we are here to give you an additional level of support for medical care planning and communication. And for those who decide on pregnancy termination or hospice, we are also here to give you education, support, and judgement-free care.

"I will be forever grateful to Lurie’s and the TCC team. When we first found out that our son Casey had Trisomy 13 at 12 weeks pregnant, we felt completely overwhelmed with worry and uncertainty and just didn’t know how to even begin to navigate our journey.

When we finally found the incredible TCC team at Lurie’s everything changed. We found a team that cared about Casey and whole-heartedly supported our goals of trying to give him the best shot at life we could give him.
We were able to ask them questions about anything and get guidance on decisions we didn’t even know we would have to make. We just felt so taken care of and less alone. The access to support, information and guidance was invaluable.

We found out Casey had passed away at 26 weeks gestation while we were in with the TCC team having an ultrasound. All I can remember is the team surrounding us with love and took care of setting up all the next steps which involved going into hospital to be induced to deliver Casey sleeping. They were there for us every step of the way. They made what was a very challenging pregnancy feel that bit lighter for us. We will be forever grateful for their support."

Casey’s Parent (T13)

“Learning about the diagnosis can fill you with fear and worry, but please know that the love you have for your child will carry you through – making the journey less frightening and more full of strength than you ever imagined.”

Maria’s Mom (T18)

The Lurie Children's Difference

Our team is committed to improving personalized medical care for infants and children diagnosed with Trisomy 13 (T13) and Trisomy 18 (T18). We meet with families at different parts of their journeys with these diagnoses. We can meet prenatally (before birth) with expectant parents if testing shows that their child may be born with T13 or T18. For those families who choose intensive care after birth, we help make sure your child gets consistent care during their stay in the neonatal intensive care unit (NICU) or the cardiac intensive care unit (CICU).

We communicate with the primary medical team, help everyone follow clinical guidelines that our team developed based on the latest medical research, and advocate on your behalf. Our hope is that each child can reach their highest potential, while acknowledging and addressing the many challenges that your family may face. We also want to make sure that you feel supported no matter what you decide or what happens before and after birth.

In the News

Dr. Natasha Henner and Grace Knowles were featured on the Talking Trisomy podcast from SOFT (Support Organization for Trisomy 18, 13, and Related Disorders) to discuss the Trisomy Care Collaborative.

Listen to the Podcast

In the News

Dr. Natasha Henner and Grace Knowles were featured on the Talking Trisomy podcast from SOFT (Support Organization for Trisomy 18, 13, and Related Disorders) to discuss the Trisomy Care Collaborative.

Listen to the Podcast

How We Can Help

We share knowledge of current recommendations and evidence-based practice when caring for children with T13 & T18. We use that knowledge to guide you and your medical team, helping you consider different pathways after birth. We can talk to you about what to expect (both short-term and long-term) based on your child’s unique characteristics, answer any questions you might have, and help streamline communication between different medical specialists. You can meet us once, or many times, depending on what you find helpful.

Additional details about the program:

The TCC group meets every month to review patients and talk about their medical care. After the meeting, someone from the group will share feedback/recommendations with the medical teams and families.
The TCC group can also meet as needed to discuss time-sensitive questions and support parents or medical teams.
We can give second opinions about your child’s medical care if they currently get care at another hospital.
Members of your care team like Case Managers and Social Work can help you apply to different waiver programs. They will help you to connect with or apply for programs your child may qualify for and help with obtaining medical equipment at discharge.
Other trisomy parents have shared with us that it is important to clarify the difference between
palliative care and hospice.
- Palliative care is an added supportive layer of care that is focused on your baby living the best life given a significant medical diagnosis. It is not taking away treatment.
- Hospice care is care for someone at the end of their life. It is focused on making them comfortable, spending time with their family (often not in the intensive care unit), and respecting their disease's natural progression

What to Expect After Diagnosis is Confirmed

While awaiting diagnostic confirmation, many parents look for additional information about what they can expect. This can be overwhelming, as there is a lot of information online, including both medical facts and opinions. The available information can sometimes feel contradictory, or only seem to support one point of view. It is important to understand all available options and to have someone on your team who is both knowledgeable about the different decisions, and open to supporting you no matter what option you decide is right for your family.

Potential Decision Points

After having comprehensive (complete) evaluation of your pregnancy and baby as well as a detailed discussion about the specific findings of the evaluation, your personal goals, and your values – parents can consider the following decisions:

Continuing the pregnancy and deciding what to do after the baby is born: Parents can consider different options for their baby’s care after birth, including intensive medical care or hospice support. Palliative care clinicians can help you think through these decisions and make a plan – for any scenario.
Ending the pregnancy: In the state of Illinois, pregnant persons are able to end a pregnancy any time before the gestational age reaches 23 weeks and 6 days (note that other state laws can be different).
*We understand this is a very challenging and personal decision, and people have different views on this option. We respect that each family is unique and that having this option is important for some – for emotional, spiritual, or medical reasons.

A baby’s life might be shorter if: