Managing a Medically Complex Child

By Elizabeth Kooy, L.C.S.W., and Adrian Codel, D.D.S., Chicago, IL

Our second son, Cael, arrived a few weeks early after my bout of food poisoning. I figured if I had come through food poisoning and labor at the same time, I could manage just about anything that would follow. I half-heartedly joked that now we would get 12 weeks of colic.

We did not get 12 weeks of colic. Instead, we got Cael. The first surprise was that he had Down syndrome. At three weeks, he was hospitalized and subsequently diagnosed with Hirschsprung’s disease — a congenital defect of the colon that sometimes goes along with DS. Cael’s first major operation to repair this was at 11 weeks of age.

Then Cael failed to thrive. Then he needed another operation for Hirschsprung’s disease. Then he could no longer pee. Then Infantile Spasms began. Then Cael failed to thrive. Then he needed another operation for Hirschsprung’s disease. Then his seizures got worse. Then we found out he had a tethered spinal cord. Then Cael needed neurosurgery. The list goes on and on and on.

We’ve been to three major medical centers. We’ve managed the ongoing care of 24 doctors and 14 hospital stays. We have done alternative treatments and managed four major operations. And all the while, most days we wake up and say, “Oh yeah — and Cael has DS,” almost as an afterthought.

We have learned a great deal along the way — some from the wisdom of parents who have gone before us. We continue to be amazed by how strong some parents are in the face of crisis.

We’d like to share our Top 10 List of Lessons Learned.

1) Medicine is different today than it was 30 years ago.

Long gone are the days when doctors spent hours getting to know patients and their families and then fixing their problems with a sort of paternalistic care. Long gone are doctors like Marcus Welby, M.D., from the early 1970s TV series. Today, medicine is about money, time management, sickness and disease. It is not about health and well-being. Medicine used to be about the whole person — now there are specialists for every single organ or ailment.

Because medicine is different, parents and patients need to act differently than they did 30 years ago.

2) Parents need to be empowered parents. Patients need to be empowered patients.

Patients and parents in the role of primary caregivers need to be active participants in medical care. They need to understand what questions to ask to become the best consumers of medical care and the best advocates for themselves or their child. They need to become educated enough on medical issues to ask the right questions and understand treatment options — and the consequences of treatment or no treatment.

3) Parents should not be afraid to question doctors, decline testing, push for testing and more.

People often assume doctors are authority figures and are not to be second-guessed or questioned. This is the worst thing parents or patients can do. In this day and age of fragmented medical care, it is vital to question doctors, treatments and medicines. When it comes to medical care, parents and patients need to understand who, what, when and why.

People should not be afraid to decline one test or push for another. When Cael was three weeks old, he was in the ER with the foulest-smelling diarrhea ever. Because he had a slight temperature, the residents and doctors wanted to do a spinal tap to see if Cael had meningitis. However, the foul-smelling diarrhea did not fit the meningitis picture and we resisted. The doctors kept saying, “Meningitis can be fatal in the newborn.” Because we knew spinal taps can be very dangerous, we pressed them about the diarrhea. They finally relented and agreed to check other things first. Cael’s actual diagnoses of enterocolitis and Hirschsprung’s disease fit his clinical picture.

4) Parents should trust their gut instincts.

Parents may be led to believe that there is nothing wrong with their child when, in fact, they know there is something wrong. Conversely, doctors may get more anxious about something the parents know is not serious. Parents have gut instincts and should follow them. Trust these instincts and pursue things that need to be pursued. Ignore what needs to be ignored.

5) Parents need to choose the right doctor.

The right doctor is the best medicine a parent with a medically fragile kid can have. There are many reasons a doctor might be the right or wrong fit for you and your child. Some families may really need flexibility of office hours. Others may be constrained by insurance. Still others may be more concerned with a doctor’s personality. It is vitally important to choose the right one for you and your child.

6) Parents should not be afraid to switch doctors or get second or third opinions.

If a doctor is not working out, it is time to get a new one.

Except for typical viruses, parents should always get a second or third opinion. Every Patient’s Advocate Blogger Trisha Torrey, author of You Bet Your Life: The 10 Mistakes Every Patient Makes, demonstrates it is essential to get second and third opinions. Good doctors welcome second opinions. If your doctor does not want you to get a second opinion, it is time to get a new doctor. We’ve upset many doctors by looking for another opinion; but, it has been best for our son.

7) Kids with DS are kids — they will get sick or have problems unrelated to DS.

Parents of kids with DS and doctors often have tunnel vision when it comes to DS. DS is not the cause of every medical issue and shouldn’t be the sole focus. In fact, kids with DS are kids first. They get sick or have things unrelated to DS.

8) Respect and accept the kid you have.

When we first found out Cael has DS, we were shocked. We quickly embraced it, though, because we have several friends with kids with DS who do very well. We expected to have our own little rock star. Instead, we got Cael. At 31 months, our son still cannot stand — or crawl.

But, he makes our hearts melt every time we hear his awesome laugh — even if it is only every week or so. Hands down, Cael gives the best hugs in the world, too. While Cael may not be the rock star we first envisioned, he is our very own lovebug. We embrace him passionately and fight for his life daily with his medical issues. In other words, we respect and accept the Cael that we have.

9) Give yourself a break.

If you have a kid with multiple medical issues, it is almost impossible to get everything done. It is impossible to be on top of hearing and vision checks or therapy three times a week. Sometimes medical appointments are put off. Therapy is put on hold. When this happens, it is important to give yourself a break and accept what you can’t do. Let go of guilt over missed appointments.

10) Take a break, too…

Parents of medically complex kids need their own breaks. Exercise, eating right and activities that improve mental health — like a vacation or a massage — are all important for parents dealing with the stress of a child with multiple medical issues. People who survive and thrive in the face of these kinds of crisis know how to take care of themselves — and do. Stress takes a toll on those who do not take care of themselves. They don’t fare well.

Editor’s note: Elizabeth Kooy and Adrian Codel will offer a workshop at the NDSC Convention in Orlando. Elizabeth is a social worker who works with kids in the juvenile justice system. Adrian is a dentist who sees both children and adults. They are the parents of two children.