Today we’re publishing the first in our superhero caregiver series of posts, featuring fearless parents who have learned to take charge of their children’s chronic disease care. This first post is particularly special to our team as it features Nell’s mom, Helen.
Helen and her husband, Paul, have seven kids, several of whom have chronic conditions. Their oldest son, Paul, has Common Variable Immune Deficiency, a condition that makes it difficult for him to fight off infections on his own. This interview will focus on Helen's experience learning to navigate the care for Paul's condition.
This interview has been lightly edited for clarity, and a few names have been altered to preserve privacy.
N: Hey Mom – thanks for doing this interview, and being the star of our first blog post! The point of the blog is to share stories, to bring together parents who have experienced the roller-coaster of caring for a child with complex needs. It’s easy to feel alone in this.
H: Yes, it’s isolating. And it can be frightening when you have medical experts in the community say to you that this is unusual, that you’re unlucky…but you know you’re not just unlucky. It’s also frustrating. Sometimes, you take your child in with ambiguous complaints, and they can’t explain it. You get the impression that they think you’re crazy, or that nothing is going on. But you keep coming back because you know that there is something wrong.
Ultimately, after 23 years I can tell you that when I thought there was something wrong, there was always something wrong. The only time I had a regret was when I neglected to follow my own instincts.
N: When did that happen?
H: There was that night when I couldn’t hear Paul breathing, and someone told me that not hearing him means that he’s breathing well. An ENT had told me days before that (it’s crazy how you remember dates – it was December 19th) that he was alright and I should go back to sleep - his tonsils were not so big that they were blocking his breathing. On January 7th, another EMT told me that his throat was 95% blocked by his tonsils and adenoids. On January 8th, they were taking his tonsils out on an emergency basis.
N: Wow. Looking back, it's crazy to realize how that played out.
H: When you have a rare kid, things happen that they can’t anticipate, so you go with your gut. I would rather pay the ER fees and spend the time than miss something.
We’ve had some bad experiences, like the home care nurse who couldn’t do the needle stick properly. We did home care infusions three times, but two of the three times we had that nurse, so we stopped. For a lot of reasons it would have made sense to keep having it done at home – I had three little ones, it was better for him not to be exposed to infections in the hospital, there was bad weather – but at the end of the day you have to do what’s best for your kid. I had a very real sense that the nurse didn’t know what she was doing.
Even recently, when he was sick in college and we visited, we realized that he was hooked up to an IV that wasn’t running! You have to realize that medical professionals are human like everyone else, and sometimes you need to step in.
N: Despite experiences like this, though, I know that you’ve also had great care from providers. Can you talk a bit about that?
H: Our experience has been overwhelmingly positive. It’s because of Dr. V – he’s the David Ortiz of pediatrics. Absolute home-runs. The key is to have a great doctor who cares about your kids as if they were his own. And they need to be able to write! You’ll need them to be able to explain situations where you need insurance company approval for things, and secure those for you. Most importantly, he trusts parents’ instincts, and he communicates effectively with them.
Especially in pediatrics, there are some very wonderful, dedicated, caring people who will go above and beyond to take care of your child. The nurses at Children’s [Women’s and Children’s Hospital of Buffalo] – the ladies in the IVIG unit – were phenomenal. The reason that Paul is able to give himself infusions today is largely because those nurses were distracting him when they had to put the IV in. It wasn’t a terrible experience for him.
N: I know you’ve also had a lot of support outside of the medical community.
H: We’ve had some great school nurses, building administrators, and guidance counselors. There was Kim – she was amazing! She did everything that she had to do to keep him as healthy as possible, through some very difficult times. He must have had 6 or 7 procedures during that time. He was still leaving school every 3 weeks...we even had swine flu during that time! She pushed things through.
For college, we needed to know he was going to be safe. Dr. V wrote a letter to the Disability Accommodations Office saying this is who he is, this is what he needs…and we got what he needed. And in other cases, some people didn’t have this. Paul had a friend who had a chronic disease and struggled to get straightforward accommodations, because she didn’t have the same level of support.
N: What advice do you have for parents who are just starting out on their journey of caring for a child with chronic disease?
H: Learn everything that you can from reputable sources, ask questions, and document everything, even if it seems at the time that there’s no plausible connection. Ultimately, you will probably find out that there is something tying it in. It might be important for treatment down the road.
Don’t be intimidated! Ask questions….respectfully, but ask questions.
You also have to realize that medicine is practiced on a regional basis…still! For some things, the right specialty would depend on where you live. For example, surgery for atypical tuberculosis was handled in Buffalo by a general surgeon and the Head of Infectious Diseases. In Cincinnati, it was the ENT Department. This can have repercussions for treatment because there’s a different knowledge base, and even different techniques, especially for chronic conditions which are evolving. We had to drive all the way to Cincinnati to find out about Biaxin.
That’s why becoming a member of a national resource group, like JMF or IDF, is so helpful. Go to conferences, talk to other people, get information.
One other piece of advice – every time I went in to get IVIG, I had to reiterate Paul’s history. I eventually just wrote it up and handed it to them. One of the most important things you can do is have a canned summary of the child, their conditions, their medications, emergency actions if necessary – think an emergency response plan at school. You’ll use it in a variety of settings – daycare, school, any new care providers, etc.
N: What about insurance issues? You’ve become a bit of an expert!
H: If you have options for insurance, research which plan will give you the best possible coverage. If possible, identify the experience of other people with chronic conditions that use that company. If your insurance company provides a dedicated resource for people with chronic conditions, use that resource! Paul had a couple of different nurse liaisons, and that helps, because that way you’re not reinventing the wheel every time – there’s someone who knows your child and what they need. Figure out ahead of time what the hoops are that you need to jump through, and do it! Typically you have the option to get a second opinion – and definitely use that!
N: Is there anything else you want to talk about that I haven’t asked you about?
H: There are two things. If your child can be allowed to ignore his or her condition, to the extent possible, to have a normal life, you may have to squelch your natural reluctance to allow him or her to take certain risks, in order to have normal childhood experiences. You want to wrap them up in a sterile room, but you can’t. Hopefully in the future, you will have a child verging on adulthood who will become a normal, functioning member of society. You have to learn not to interfere. I fight that all the time, and I’m still fighting it.
Even 13 years ago, I couldn’t have believed that he would be where he is and would have done what he’s done. When he went to college, I was very worried that he was going to crash and burn. But he nailed it! I think a large part of that was because he never thought that he couldn’t.