When you are told that your newborn baby has a metabolic disease, it brings a lot of tension. Fortunately, you get used to this quickly and you will see that your child is developing normally. Here are 8 tips to help you get started.
You have just had a baby, an event full of joy and love that you share with your loved ones. It can also be an overwhelming time, especially after hearing the news that your newborn baby has a metabolic disease. The first days or weeks after diagnosis can be a bit scary, as they represent a period of uncertainty.
It's natural to experience feelings of sadness, disappointment, guilt, sadness, and/or anger, as the diagnosis may have come as a complete surprise and the expectations you had before your baby was born, such as exclusive breastfeeding, have now completely changed. Most parents begin to feel more optimistic when they see their babies developing normally and understand how to monitor blood Phe levels.
Here are some tips that can help you deal with this situation and provide the best possible care for your baby.
- Give yourself time to process
- Immerse yourself in the condition
- Consult the treatment team
- Create a support network
- Take care of yourself
- Stay positive and hopeful
- Document the journey
- Celebrate the milestones
Tip 1. Give yourself time to process
It's important to recognize that it's normal to feel overwhelmed. Give yourself time to process your emotions and seek support from family or friends.
Tip 2. Immerse yourself in the condition
Knowledge is power. Ask your doctor or dietitian for clear and detailed information about your baby's metabolic disorder. Find reliable sources and take the time to understand what the condition entails, what treatment options are available, and what to expect. This can help you feel more in control of the situation.
A child with PKU, for example, can grow and develop normally. Just like all other children. As long as your child sticks to their diet and follows the instructions of the treatment team, PKU is no barrier to achieving their dreams!
Tip 3. Consult the treatment team
It is essential to determine and tailor the necessary medical care in consultation with the metabolic care team. They can provide you with the right guidance and create a treatment plan that is specifically tailored to your baby's needs.
Tip 4. Create a support network
Dealing with a baby who needs extra care can be exhausting. Create a support network of family and friends who can help you, whether it's practical support or emotional support.
You should also consider reaching out to parent groups for children with metabolic disorders. We recommend that you request information from patient associations. Most of them organize meeting or information days.
Tip 5. Take care of yourself
Don't forget to take care of yourself as well. You can only take good care of your baby if you are healthy and rested yourself. Take time to rest, eat healthily, and take breaks when needed. Don't hesitate to ask for help when you need it.
Tip 6. Stay positive and hopeful
Although it may be difficult, try to stay positive and hopeful. Metabolic disorders can be managed with proper treatment and care, allowing children to live a good life. Focus on the progress and the small victories your baby is making.
Tip 7. Document the journey
Keeping a journal can be therapeutic and help you keep track of your baby's medical care and progress. Write down important information such as doctor visits, medication, nutrition, and changes in your baby's health.
Paste photos weekly and write fun anecdotes in the diary. Nice to look back on this later.
Tip 8. Celebrate the milestones
Don't forget to celebrate your baby's milestones and successes, no matter how small they may seem. These moments are important and can give you courage and hope to keep going.
Remember that every parent is unique and you will find your own way. Enjoy the little moments and be kind to yourself. You have a beautiful baby and together you can take on these challenges!
