Three weeks after Ilse was born, I had to agree to surgery for her.  I listened as the surgeon tried to convince me to allow him to do a fundoplication on my daughter, telling me the only parents who had told him ‘no’ ended up killing their daughter because she aspirated.  I still said no.  I knew it wasn’t necessary.  Then I had to watch as her doctors wheeled her away.  I had hurriedly whispered the Gospel in her ear just in case she died in surgery, but that didn’t make me feel better.  I had begged the OR nurse to hold her hand as tears streamed down my face.  I was terrified.  In retrospect, it was a minor surgery, but it was the first one I, as a new mother of a newborn, had ever experienced.

I waited in the cafeteria with my husband and parents.  I got up constantly to check the status board-- first it showed the scalpel, saying the surgeon had begun, then the stitches, saying they were finishing, then the Band-Aid.  Finally they were finished cutting on my baby.  As we reached the surgery waiting room, the surgeon was waiting for us, telling us to come on up, that they were just wheeling her back into the NICU.  My mom and husband walked ahead while I talked to the doctor.

When I got back to the pod where Ilse lay, my husband and mother met me outside.  “You need to be prepared, Emma” they said.  What?  I thought everything had gone well!?  Apparently though, Ilse had woken up before she was supposed to and was fighting the intubation.  The doctor was in there extubating her sooner than planned.  The nurse was angry because my husband insisted on the doctor seeing Ilse in order to extubate her.  She said Ilse needed to sleep for 24 hours after surgery.  However, the doctors hadn’t given Ilse the meds to keep her asleep, so she was fighting.  After the extubation, I got to see my precious girl.  She had no tape on her face.  It had been three weeks since I had seen her unadorned cheeks.

That afternoon I sat by my daughter and when I told the nurse I didn’t want her to hurt or cry, the nurse told me, “She’s just going to be in pain and cry.”  That made me so angry.  It wasn’t true!  It didn’t have to be true.  I insisted she have medicine and I refused to leave her side until I was sure she was comfortable.

I tell that story to introduce the topic of advocating for our children.  Parents of so called ‘normal’ children don’t experience the same kinds of things we do on a daily basis, so it is a foreign concept to them that someone might have to advocate for their child.  It is even a foreign concept to us until someone tells us that we are our child’s voice.  I vividly remember my brother-in-law, himself the father of a child with exceptional needs, telling my husband to remember that the doctors work for us, and not the other way around.  That notion formed the basis for the way we advocate for our daughter.  From Ilse’s earliest days, we learned we had to speak up to doctors, nurses, and even our own families.  We fired doctors, we researched, we insisted, we taught about our daughter’s syndrome.  We became the experts on Ilse.  That is your job, too.  It is your job to become the expert on your child so that you can advocate for him or her.

When a dad was asked what he thought about the subject of advocating for his child, this was his answer:

"One of the biggest keys is educating yourself.  If a doctor comes to you and says, “This is what your child has and this is what he needs,” you need to be able to decide, sometimes instantaneously, if that is true and if it is the wisest course of action.  Parents need to be the expert in their child’s syndrome or disease.  It’ll take time and effort, but if your goal is to represent your child and his interests, the only way to do that is to know your stuff."  ~ Tim

We sought out all the research articles about Smith-Lemli-Opitz Syndrome we could find.  I read every one and remembered it—a phenomenal memory about research was one of the weird blessings that came with the sleep deprivation native to a family dealing with a child with this syndrome.  I observed Ilse and learned what made her tick.  I steeled myself to open my mouth and speak up when something wasn’t right.  That part was hard for me, since I had been brought up never to question authority.  I had to learn that I am the authority over my child’s health, not the doctors.  I haunted the internet sites about my daughter’s syndrome, feeding tubes, and different medical products.  I even read the information booklets that came with various medical equipment that we didn’t have.  I fired Ilse’s first pediatrician because she was negative about Ilse’s potential, and I searched the internet until I found a doctor I thought I might like.  Then I made an appointment and interviewed her, telling her exactly what I wanted in a doctor, down to what I wanted her attitude to be.  She has never disappointed me.

Part of the role I have in my daughter’s healthcare is knowing what tests she needs and when.  I know when we check liver function, cholesterol levels, and do allergy tests.  I ask for them and the doctor writes for them.  I’ve heard it said that it is better to let doctors be doctors and nurses be nurses, that moms should just concentrate on the hugs and cuddles and being moms.  I disagree.  I don’t trust anyone to handle my daughter’s healthcare as well as I can.  I will not step back and let someone else make all the decisions and be the sole keeper of all the information.  My philosophy is that the doctor and I are a team, but I am the captain.  My child’s health is not the doctor’s show.  The doctor is a principle actor in my production.  If the doctor wants to do something I don’t agree with, then that doctor needs to give me a really good reason that makes sense.  Then if I agree, I will get it done.  On the flip side, the doctor needs to be the brakes and tell me if an idea of mine is not wise.  Also, the doctor needs to listen to me and give my opinion MUCH weight, because I am Ilse’s mother.  This is where being educated comes in handy.  If you have not educated yourself, you won’t be qualified to offer a decent opinion, and no doctor will listen.  You must educate yourself so you can advocate for your medically fragile child.

Did you know you don’t have to allow your child’s stoma to be dilated while your child is awake? You can say no.  You can walk out of the emergency room.  You can drive to another hospital.  You can insist on pain medicine for blood draws and you can ask a doctor or a nurse to leave if you do not like what they are doing.  Have you seen the posters some hospitals have posted in their rooms? There is a procedure for getting help if you are not satisfied with your care.  You don’t have to allow your child to cry in pain, you don’t have to wait hours for pain medicine, you don’t have to allow the surgeon to do a fundo.  You can find a new surgeon.  You do not have to leave an appointment without all your questions answered and without feeling completely satisfied about the decided course of treatment.

You are your child’s loudest and perhaps only voice.  Your child is depending on you to ensure he is comfortable and happy, and even that he develops as best he can.  Sometimes also that voice must say, “enough’s enough” and allow your child to rest peacefully.  I firmly believe that when you take the time to learn your child, you will know what is needed.  And then you only have to open your mouth and say it.


Advocacy: You are the Captain of Your Child's Team

by Emily Minich