For parents: it’s okay to feel what you feel

When Brandon was born, he was rushed away right after birth. No one had known about his cleft beforehand. If you're feeling shock, fear, grief or guilt, you are not doing anything wrong. These feelings are common.

What other parents have felt

You are far from the only one. In a small German study of 84 mothers, fear was the most common reaction to the cleft diagnosis, reported by 60.7% of mothers; despair, grief and guilt were also reported.^[1] The mothers who felt the most strain often said they had not been given enough information.^[1] Parents interviewed for a University of Oxford project described shock, guilt, worry about feeding, and adjusting to how their baby looked, and some went on to have postnatal depression or anxiety.^[2] One mother who needed treatment for depression still said, "I still loved my son, I still loved being a mum."^[2]

A parent writing for the American Cleft Palate-Craniofacial Association (ACPA) described feeling "sadness and loss" and "fear of the unknown" when the picture of the baby they expected changed, and urged other parents not to keep their feelings "bottled up."^[3] Feeling sad about the birth you imagined doesn't mean you love your baby any less.

About guilt

Many parents ask, "Did I cause this?" The CDC says the cause of orofacial clefts is unknown for most babies, and that clefts are thought to be caused by a combination of genes and other factors.^[4] ACPA's letter to parents is direct: "It's so important not to blame yourself, your spouse, or anyone for causing your child's cleft."^[3] Psychologists who work with cleft-affected families list guilt and blame among the feelings parents commonly cope with.^[5] If guilt keeps coming back, say it out loud to someone on your child's cleft team. You won't be the first parent to ask.

Most families find their footing

In a large Scandinavian study, most parents of 5-year-olds with a cleft said they got practical and emotional support from family, friends and health professionals, and the researchers concluded that most parents coped well.^[6] They also found that some parents were at risk of emotional difficulties and recommended that cleft teams identify them and offer psychological support.^[6] Asking for that support is part of coping, not a sign that you aren't.

Baby blues or something more?

Every new parent is tired and emotional. The National Institute of Mental Health describes the "baby blues" as mild, short-lasting mood changes that usually go away within about two weeks of birth. Symptoms that are severe or last longer than two weeks may be signs of postpartum depression.^[7] About 1 in 8 women with a recent live birth report symptoms of postpartum depression, according to CDC research.^[8] Postpartum Support International (PSI) says 1 in 5 women and 1 in 10 men have depression or anxiety during pregnancy or after birth (2023).^[9]

Signs to watch for in yourself or your partner include:^[8][10]

• Sadness, worry or an "empty" feeling that won't lift
• Crying more than usual, or feeling angry or irritable
• Feeling distant from your baby, or doubting you can care for them
• Constant fear about the baby's health and safety
• Big changes in sleep or eating, or trouble thinking clearly
• Losing interest in things you used to enjoy

Partners are not immune. The American Academy of Pediatrics notes that between 7% and 9% of new fathers develop postpartum depression, and that partners of any gender, adoptive parents and parents through surrogacy can too.^[10] NIMH is clear that a mother "is not to blame or at fault for having perinatal depression," and that it can be treated.^[7] If any of these signs sound familiar, tell your own doctor or midwife and ask for a referral.^[8]

What helped us

Brandon's mom, Karen, turned her gray cloud into a book for other parents. Its message is printed on one of the front pages: "In every cloud there is a silver lining."

You don't have to do it alone

• Your cleft team. ACPA-approved teams must have access to a psychologist, social worker or other mental health specialist to support the family.^[11] Some parents in the Oxford project didn't know this help existed until later, so ask early.^[2]
• Other cleft families. Parents in the Oxford project said meeting other families helped them see that what they were feeling was "completely normal."^[2] Your team or a cleft organization can connect you. [Add Clefts United community or partner link if available]
• Postpartum Support International. Call the PSI HelpLine at 1-800-944-4773, or text 800-944-4773 (English) or 971-203-7773 (Spanish). Leave a confidential message and a volunteer gets back to you. PSI also runs more than 50 online support groups, plus groups for moms and for dads. For a crisis, PSI points people to their doctor or local emergency number.^[12]
• National Maternal Mental Health Hotline. Call or text 1-833-TLC-MAMA (1-833-852-6262) for free, confidential support 24/7 before, during and after pregnancy, in English and Spanish, with interpreters for 60 other languages.^[13]
• The people around you. Let friends and family take the everyday things (meals, laundry, rides to appointments) so you can rest and focus on your baby.

If you are in crisis or thinking about harming yourself or your baby, call 911 or go to the nearest emergency room.^[8] In the U.S., you can also call or text 988, or chat at 988lifeline.org. The 988 Lifeline is free and confidential^[14] and available 24/7 for people in suicidal crisis or emotional distress.^[15]