Just received prenatal diagnosis:

HOW DO I SORT THROUGH MY FEELINGS? While each parent and family member will experience his or her own personal emotions and reactions to the prenatal diagnosis, the recovery process for each may have lots in common: • Disbelief, confusion, fear or similar responses may be the first feelings to flood in after a prenatal diagnosis. • As the reality of the diagnosis becomes clear, many experience a sense of loss and sadness. Viewing ultrasound images may be helpful at this stage. • Naming the loss helps family members actively mourn whatever the loss(es) may be. Recognizing that baby’s face may look different than imagined (naming the loss) and recognizing the feelings associated with that difference (actively mourn) is one example. • Recovery moves families into problem-solving. As emotions peak then settle, families may be then be ready to educate themselves about clefts and cleft care. We encourage parents and families to treat themselves and their loved ones with extra care and patience during this recovery process. Families who have had similar experiences tell us that once the tide of emotions began to calm, they were ready to learn more about their baby’s needs and cleft care and reclaim the excitement of welcoming baby into their family. WHAT SHOULD I DO IN THE MEANTIME? 1. Take time to think about this new information. You knew you were expecting a baby. Now you know something specific about him or her. Give yourself time to digest this information. 10 2. Pay attention to how you are feeling. Notice your feelings and how they may change over time. You may feel a range of emotions including disappointment, anger, grief, guilt, or even relief over your child’s diagnosis. It is okay to talk to your loved ones about these feelings, and it’s also okay to take some time alone to process them yourself.

3. Adjust to the new information. Though some things may feel very different now that you know your baby will be born with a cleft, many things will remain the same. You will continue to prepare for your baby’s arrival with excitement, but may need to make some adjustments to your plans. For instance, your baby will likely need to be

4. When you’re ready, begin to educate yourself. As you adjust to the new information, your emotions may require less attention, allowing you time and energy to address some of the questions you may have. As your expertise in clefts and cleft care grows, we hope that your confidence in planning for the future will grow as well. 5. Expect that others will have as many questions as you have. Think about helpful ways to respond to curious questions from both strangers and friends. Brief responses to questions may help others quickly learn about your baby’s condition and allow you more time to show off your beautiful new family member. • Keep your responses short by providing a very brief explanation. For example, “My baby was born with a cleft, it will be repaired when he/she is a little bigger.” Practice until you come up with a response that feels right to you. • Try to focus on the positive in your explanation; your child hears and experiences your responses far more than he or she notices questions from others! • Remember that a cleft is only one small feature of your child. • Your child’s cleft will not stop him or her from experiencing all the ups and downs of childhood. • Your dreams for your child’s future do not need to change because of the prenatal diagnosis of a cleft.

TELLING OTHERS

Telling Friends and Family

Once parents have come to terms with their child’s diagnosis, their thoughts often turn to how to explain the diagnosis to friends and family.

“After speaking to CLAPA, I printed off some photos of cleft babies and tried to explain things to [2-year-old] Noah in simple terms. “You’re going to have a little brother and he might look a bit like this,” I said, trying to sound upbeat. He studied the images curiously and didn’t look distressed at all. But I knew the test would come once the baby had arrived. Aside from Noah, we knew we had to prepare our loved ones too, so it wasn’t a shock when he was born. “I want them to celebrate his arrival, not pity us,” I said. So Alex and I agreed it was best to share the news sooner rather than later.

When we’d been expecting Noah and were told he might have Down’s syndrome, we’d kept it to ourselves as we didn’t want to worry everyone. But as the pregnancy progressed, I’d found it tough and could have done with support. I started by calling round our nearest and dearest. Some took the diagnosis better than others. There were lots of questions and I tried to answer as best I could, although I still didn’t understand it myself, really. “He’s perfectly healthy, apart from this,” I explained. “And so am I.” After that I decided to post the 4D scan of our baby on Facebook, as an easy way to spread the news. The response was amazing – calls, emails, comments – and all overwhelmingly positive. People just wanted to know how they could help.”

– Joanne

How much – and who – you will want to tell will depend entirely on you and your personal situation. Some will want to reach out straight away to get support from people in their life, while others will want to wait until they have firm answers to the questions that will inevitably follow news like this.

Healthtalk.org interviewed a number of parents about their experiences of diagnosis and how they dealt with telling other people. You can watch videos of these interviews and read their findings on the Healthtalk website.

You may find it helpful to link to CLAPA’s photo gallery of babies and young children, or to our ‘What is cleft lip and palate?’ section.