Having a baby born with a cleft lip and palate can affect all members of the family and adjusting to this may involve experiencing a range of emotions where ‘psychosocial factors’ are involved.
‘Psychological’ factors describe the feelings you may have and how you deal with those and ‘social’ factors involve how relationships may be affected with family, friends and even strangers that you meet. As your child grows this is the area that is concerned with the impact on your child’s life, their sense of self, and how they react with the challenges they may face along the way.
Just as we are interested in our baby’s physical development, as parents we want to know that our children’s social development and coping skills are effective and that emotional levels are healthy as well.
Before Baby is Born
It is normal to have a range of emotional responses to unexpected news. It is important for your mental wellbeing to be able to recognise your feelings and express and work through these and face any underlying fears and anxieties if they come up.
Many families experience grief, sadness, anger, and ask why has this happened. Some parents may feel that they have done something wrong to cause the condition and as a result, there may be some guilt and anxiety about the future.
There are many things that you can do to address these feelings and reduce their impact on you…
- Talk. Talk to your partner, to your family. Let them know how you are feeling.
- Talk to other families with a child born with cleft who understand what you are feeling without judgement.
- Learn about what the plan will be and how fantastic the future will look.
- Understand your important role within the team. It makes you feel more in control and able to meet the challenges you feel may be coming.
- Use this website to find out what you need
- Ring Cleft New Zealand to ask your questions 0800 425 338
- Get a Blue Book
- Meet your local Cleft Team
- Ask as many questions as you need to – no question is too small.
- Give yourselves time and space to come to terms with this slightly altered picture of the future.
- Let your family and friends know. We can help.
- Remember to relax. It is going to be OK. Your baby will have all the opportunities every other baby has!
- Enjoy your pregnancy and get ready for the miracle of birth.
All this can greatly increase your sense of control and preparedness in the face of this unexpected diagnosis.
Its OK, everything you are feeling is normal! Your acceptance of this condition is crucial to your child’s future sense of self and wellbeing.
Having a baby with a cleft may cause parents to grieve for the “perfect” baby they were expecting. With any type of grief or loss, individuals may go through different stages of emotional responses when trying to cope. These stages often involve firstly experiencing numbness, then denial (this is not happening to me), then negotiating (if I do something this will alter the situation), then sadness and finally acceptance.
These stages do not necessarily occur in this sequence and some of these stages may occur several times and last for different periods of time. It is important to accept these feelings and allow yourself to work through this in your own time and know that what you may be experiencing is a normal reaction.
Birth and the first few weeks
As with the arrival of all babies – you will be busy and tired. Getting support to make it easier for you at home will improve your ability to cope.
Feeding & bonding
For some mums it can be very traumatic to lose the ability to breastfeed. Getting the correct support to show you how you can successfully feed and nurture your baby can overcome these feelings.
There are many ways you can bond with your baby, but mostly it’s about spending time with them; staring into each other’s eyes, cuddling and talking, singing and reading – just being together.
Remember you know your baby best and it is this knowledge of your baby which is vitally important in their care and nurture. The medical team are specialists but you are the specialist in your own child’s needs.
Coping with other people’s reactions
It can be hurtful to experience other people’s reactions to your gorgeous baby’s difference. Some days it won’t affect you and other days it will, but always reach out and talk about your feelings with people who care and surround yourself and your baby with people who will look after you with the kindness and the excitement that all new parents and babies deserve.
If strangers stare, tell them what your child has. Usually people are genuinely interested and you have just educated another person.
Dealing with Stress
You can be on a pretty steep learning curve. There may be a lot of medical information to take in, lots of people to interact with and new and different systems to try and navigate. This can be stressful. If there is the possibility of surgery coming up, this can increase your anxiety levels and your concern for your precious baby.
Understanding what will happen and knowing that it will be okay will reduce your anxiety. This is why being involved and understanding the system can give you an increased sense of calmness and control, but remember we all cope with stress differently. If you find that your stress levels are beginning to affect your relationships and mental health then most definitely reach out for some help.
How could my child be affected?
Often our children are much more resilient than we realise, and in fact cope better than adults. Our children generally have very healthy self esteem, because as parents we have been aware of building their self esteem from an early age. There is anecdotal information that our acceptance of our child’s cleft has a very large impact on their ability to move on.
I feel very positive about the experiences that having a cleft has given me. I know who my true friends are and know what is important in life. I think my parents could do with more support. (18 year old born with a bilateral cleft lip and palate)
Being aware of potential challenges helps us as parents to look out for risk factors or signs to alert us into action. Many children have no negative effects from being born with a cleft.
Some children may develop anxiety around being with medical staff and having medical procedures and surgery. It is important to address their concerns so that they are better prepared for this. Research has shown that patients heal better when feeling calmer and less distressed.
The Role of Self Advocacy
Frustrations with a system which doesn’t always recognise individuality can be a challenge for us as parents and for our child as they grow up. Children should have their evolving decision-making role acknowledged and should be personally addressed during appointments. As our children grow up they need support in making choices about their care and preparing for major procedures such as the alveolar bone graft and jaw surgery.
Feeling their difference
We have a highly appearance-conscious culture so we need to offer our young people a safe and respectful place to share their feelings and concerns. Peer support is crucial and some children and adolescents may benefit from ongoing psychological support to help them to discuss their problems.
Behaviour indicating anger, non compliance or withdrawal are cues to alert us that all might not be as healthy as we hope for our children. Act on any concerns you may have and seek help because early intervention is important to promote the use of helpful coping strategies.
Rest of the family
Acceptance of your child with a cleft promotes a positive role model to others and creates the correct nurturing atmosphere for your growing child.
Family and friends will have reactions, as you did, to the news of a difference such as cleft. Allow them to have their own emotional feelings and give them information to overcome their anxieties.
Your baby does not know that having a cleft makes them any different so everyone around them needs to treat them no differently. Balance this with being sensitive to their emotions and feelings as they grow up because acknowledgement of feelings is very important in the growth of healthy self esteem. Allowing people to voice their true feelings without fear of ridicule or minimisation is very helpful. You don’t need to solve any issue, just allow them to recognise the problem and express and acknowledge their feelings.
Involve siblings where possible – talking about the cleft should be a normal topic of conversation – not over-laboured but not a taboo topic either. It is important to ensure that the other children get attention too.
How to build self esteem for yourself
Try to not get caught up in negative thinking and instead think of yourself as special and that life is a challenge. This is when positive self-talk lessens the impact of negative thoughts and the development of sad or angry emotions.
Praise yourself when you do well and build on your strengths.
When interacting with other people if you act confident they will see you as confident. So have positive body language, straight posture and make clear eye contact. Also, try to be assertive and when you communicate with others about your cleft you are improving their awareness and teaching them about what it is like to have a cleft. Make a decision to live life to the full – view it as a challenge.