As parents, your life will be filled with the same delights and difficulties as any parent with a newborn. As all parents who devote their time in raising their children you will care about the wellbeing and safety of your baby. For most of you however, being the parent of a child with myelomeningocele will be a new experience filled with challenges and joy. This experience may be overwhelming and stressful at times but there are supports to assist you and your family. Emotional supports are available through the medical social worker, PHN, community services you will be involved with and the ongoing support from CHI at Temple Street consultants and nurses in the spina bifida specialty.
The medical social worker offers emotional and practical supports to you when you are here in the hospital. Practical supports available to you are domiciliary care allowance and long term illness card and this can be started for you in the hospital. This allows your family to manage a bit better financially If you require further supports when you leave the hospital, the medical social worker can assist with this also. Having these supports can assist with alleviating stressful feelings.
Your baby has the same needs and wants as other babies, as well as having complex medical and developmental needs. Most parents discover that learning about these complex needs is an ongoing process. We encourage you to be well informed and engaged with all practitioners involved in your child’s care for their best outcomes.
Coming to terms with the news that your baby has additional needs will take time and it is a process. Coping with a new diagnosis will create initial feelings of shock and you will question how you will cope with all the practical arrangements of your new life. Following a diagnosis parents and extended families have reported overwhelming feelings of loss. This new diagnosis can be a worrying life changing event. Loss is not just an individual experience but it impacts the family unit and extended family. Parents cope differently to each other and a new diagnosis can put a strain on relationships. A medical social worker will meet you and offer ongoing supports and offer counselling supports to you during this time. Importantly, accepting and engaging with all the supports offered to you by professionals involved and being with your family, extended family and friends will help you with this.
Making decisions about necessary medical procedures all require emotional energy and understandably this is very tough for parents. Unfortunately some parents blame themselves and others for what has happened to their baby and you will feel a range of different emotions and reactions during this time. This is a normal process and it is okay as you are trying to process all of this and navigate your new life now. As a result of this new journey in your life you will have good days and bad days.
Although easier said than done, self-care is very important. As new parents the experience can be demanding, overwhelming, confusing, exhausting and you need to take care of yourself. It is important to continue to meet with your family, friends and professionals for ongoing support and help with what you are going through and what you are entitled to. You will grow with your baby as they continue to develop, change, acquire personality and become their own person.
“It shouldn’t matter how some children learn
as long as we are encouraging them not to stop”
Robert John Meehan