The shock and dismay parents feel as soon as they find out their child has a birth defect is overwhelming. There really is no way to describe the spectrum of emotions that are experienced when the understanding of the malformation sinks in and parents are left with visions of their worst fears come true. Their lives are forever changed in that one moment.
Moving through the next days, weeks, and sometimes years can be extremely difficult for parents. Muddling through that time is not option; often important decisions need to made and parents have to be present in order to make the best decisions for their child. Though this is not a comprehensive list for parents, it is crucial list of helpful steps parents can take to help maneuver through a difficult time.
Guilt and Grief
It is okay for parents to grieve the loss. Parents often visualized a different set of circumstances – one that included a healthy child. When that doesn’t happen, parents feel guilty about their feelings. It is normal to have these feelings and if parents don’t deal with this early on, it can lead to unresolved mental and physical problems later on.
It is okay to grieve, and parents must more through the stages of grief. People don’t always progress through the stages in sequence, but go through one or two stages simultaneously.
Guilt can also be a factor for many parents in this situation. Whether it is founded or unfounded, move on and focus on the child. Feeling guilty is a waste of time and doesn’t help the child.
Research Child's Condition
Now is the time to learn everything possible about the child’s condition. Parents must do the following in order to help their child:
- Conduct extensive research about new medical techniques and learn as much as possible about the condition.
- Seek out specialists for the condition and don’t hesitate to call them, make an appointment, e-mail and communicate with them about the child’s medical course and future. (Don’t let state boundaries be a barrier).
- Determine the best therapy available for the child and make sure he receives it.
- Research support groups and connect with other parents of children with the same disorder and share experiences.
Expect Challenges Ahead
It is frightening to picture the challenges that may be ahead, but it is necessary to begin preparing for them. Keep in mind that parents must think about every single decision that is made for their child and they should take into concern their child’s advancements developmentally, physically and emotionally. Keeping all decisions focused on offering the child the best possible life in their situation can bring some comfort.
With that said, it is easy to get caught up in all of the emotion, the medical concerns, and the uncertainty of some situations. Focus on the child. Enjoy the time with him, educate him whenever possible, laugh with him and offer rewarding experiences that the whole family will enjoy. Also, take pleasure in the small accomplishments the child makes and celebrate each one.