Questions to ask your cleft team

First appointments can be a blur. There is a lot of new information, a lot of new faces, and usually not much sleep. Bring this list, write the answers down (or ask if you can record the conversation on your phone), and remember: no question is too small.

It helps to know that asking questions is part of how good cleft care is meant to work. The American Cleft Palate-Craniofacial Association (ACPA) says families should be given information about recommended treatments, options and risks, and that teams should "actively solicit family participation and collaboration in treatment planning."^[2] You are part of the team.

About the team itself

Cleft care usually works best when a team of specialists works with the family.^[3] A team often includes surgeons, a pediatric dentist, an orthodontist, a speech-language pathologist, an audiologist, a geneticist, a nurse, an ENT (ear, nose and throat) doctor and a pediatrician.^[1] ACPA suggests it is perfectly fine to ask how the team works and how experienced it is.^[1]

• Who is on our team, and who is my main contact between visits?
• How often does the team meet, and how many children do you see at each meeting?^[1]
• How long has this group been working together?^[1]
• How often does the surgeon perform the specific surgery my child needs?^[1]
• Is the team listed with ACPA?^[1] (Outside the US, ask how your team fits into your country's cleft care network.)

About the plan

Every child's plan is different, but it helps to know the general shape. In the UK, the NHS says lip repair is usually done at around 3 months and palate repair usually between 6 and 12 months.^[4] The CDC says cleft lip repair usually happens in the first few months of life, and that palate repair is recommended within the first 18 months, or earlier if possible.^[3] ACPA's standards say teams should share recommendations both in writing and in person, and keep a long-term treatment plan that is updated as needed.^[2]

• What type of cleft does my child have, in plain words?
• What is the treatment plan, and roughly when will each step happen?
• Can I have the plan in writing?^[2]
• What should I do to get ready for the first surgery, and what will recovery look like at home?
• Are there any other tests you recommend, such as a genetics appointment, and why?

About feeding and growth

Feeding is often the first big question. ACPA's standards say the team should contact the family shortly after referral to help with feeding.^[2] At the first visit, the American Academy of Pediatrics says the team will make sure the baby is feeding and growing well.^[5]

• What's the best way to feed my baby? Do we need a special bottle or nipple, and where do we get it?
• Can I breastfeed or pump? Who can help me with that?
• How long should a feeding take? ACPA's parent booklet says a feeding should take about 30 minutes or less.^[6]
• How often should my baby be weighed, and by whom?
• What signs should make me call you, and what number do I call after hours?

About hearing and speech

Children with clefts may have ear infections and hearing problems more often, as well as challenges with speech and teeth.^[3] ACPA's standards say hearing checks should start at birth with newborn hearing screening (in the US), and that a baby who does not pass should have a full hearing evaluation by three months of age.^[2] In the UK, the NHS care plan includes speech assessments at 18 months, 3 years and 5 years.^[4]

• Did my baby pass the newborn hearing screen? If not, when is the follow-up?
• How will we know if hearing or speech needs extra support?
• When will my child first see the speech-language pathologist?
• When should my child start seeing a dentist?

About support for all of us

The AAP notes that being the parent of a newborn with a cleft "can feel overwhelming."^[5] ACPA's standards say psychological and social support professionals should ideally be part of the team, and that psychosocial screening is "a core component of cleft team care."^[2] Asking about this is not a sign that you are not coping. It is simply using the whole team.

• Is there a social worker or psychologist on the team? How do I reach them?
• Can you connect us with other families or a parent support group?^[5]
• What should I tell siblings, grandparents and caregivers?
• How will my child be included in decisions as they get older?^[2]

About costs and insurance

In the US, ACPA says private or group insurance usually covers at least part of cleft treatment, and that your insurance company should be the main source of information about your coverage.^[7] Other sources of coverage can include Medicaid and programs such as CHIP and state programs for children with special health care needs.^[7] Some teams have a financial counselor, or a coordinator or social worker who plays that role, and they may help with appeals and with sending treatment information to your insurer.^[7]

• Who on the team helps families with insurance and costs?
• Which parts of the plan are usually covered, and which might need pre-approval?
• Are there local programs or charities that help with travel, equipment or other costs?

A few tips for the visit

• Bring a second person if you can, one to listen and one to write.
• Keep one notebook or phone note for every appointment, so the whole story is in one place.
• If you don't understand an answer, it is okay to say "Can you explain that another way?"
• Before you leave, ask: "What is the next step, and when will we hear from you?"

Your child's own cleft team knows your child best. Use this list as a starting point, and add your own questions as they come up.