In preparation for Daisy’s arrival, I read a fair amount of baby books, blogs, articles, and brochures at the doctor’s office. I had all the apps, I signed up for all the classes, I read all the online forums. Nowhere in that sea of information available to new mothers was there any information about how to advocate for your baby should they be born sick. In retrospect, I needed that guidance far more than any buyer’s guide to city strollers.
Sometimes praying over your baby just isn't enough.
Should you ever find yourself in a position where you need to advocate for your child, here are some of the best things we have learned over the last two years:
Trust your instincts. Even for brand-new parents, you will understand your baby more than anyone else. Follow their lead and what feels right to you.
Understand that you may sometimes need to protect your child from becoming an experiment. Doctors are also often researchers and authors – they will always have good intentions but may sometimes want to push the limits in the name of science. You will know best how much is too much.
Seek out a second opinion whenever time and finances allow. Physicians often have different approaches and in order to make an informed decision that is best for your child and your family, take into account as many viewpoints as possible.
Do not allow yourself to be intimidated or silenced. It can be easy to feel like the dumbest person in the room when you’re surrounded by surgeons – but you have your own strengths and areas of expertise, this is (likely) just not your specialty. Ask questions until you feel comfortable and request diagrams when you need them. One of Daisy’s doctors carried an iPad and her illustrations helped us see how procedures would affect her and where.
Ask your doctor what they would do for their own children. I always found that when I asked this question, the conversation took another direction entirely.
Keep a binder with loose-leaf for note-taking and page protectors for forms, x-rays, lab and test results etc. Take notes throughout every meeting with a doctor or nurse – conversations may seem clear in the moment but in our experience, they started to bleed together after a while and lack of sleep interfered with our memory. Keeping thorough notes kept us sane and organized.
Hospitals often have insurance specialists who are available to help you navigate billing and insurance. The American healthcare system is a disgraceful nightmare (I’ll spare you my passionate thoughts on this topic) of obscure codes and unbalanced costs. Seek help early on and forge the best friendship you can with the insurance liaison who is available to you.
Do your own research – but keep it to medical journals. Don’t allow yourself to fall down the deep, dark rabbit hole of illegitimate websites and forums. There are reliable academic resources available to the public that are the best source of information even for the lay person.
Medical professionals are people too – with moods and difficulty communicating sometimes. Take every bit of dialog with a grain of salt, understanding that tone and bedside manner vary from person to person and can influence the way you receive information. I’ll never forget the neurologist who examined Daisy and told us he had “no reason to be optimistic” about her future. His colleagues warned us he was a pessimist – and thank God they did, I might’ve completely gone off the deep end otherwise.
Stay calm and collected as much as possible – especially around your child. Even babies can sense anxiety and tension in their parents and what kids need most from their parents is a feeling of assurance and hope. We were always careful to leave our tears for the car ride home.
Build positive relationships with everyone you come in contact with – from the security guard checking your ID at the front desk and the person mopping the hallway floor to the Chief of Surgery. Every one of those people plays a part in your child’s care experience and you need everyone on your side.
As with anything in life, kindness, honest communication and preparation go a long way. With Daisy, we were incredibly blessed to work with medical professionals who immediately felt like family. That is a gift I will never forget and one that has made our journey with Daisy such a positive and rewarding one.
As we continue to work through her health issues, we have decided to start fundraising on behalf of the two hospitals that provided the bulk of Daisy’s care – starting with the Children’s Hospital of Philadelphia. I have added a page on this website that links to our fundraising page. We are hoping to raise $5,000 for CHOP this year to support research and patient care for families like ours and kids like Daisy. Please consider joining us ❤