The news that your baby needs surgery is rough. It doesn’t matter if the procedure is presented to you as routine or minor or outpatient. This is your baby… at the total mercy of someone else … someplace you can’t go. You go through levels of anxiety that you didn’t know existed. Anytime Henry has had to go through anesthesia for MRI, surgery, or echocardiogram I have been a giant knot of nerves. I realized as we sat in the waiting room that if I felt this way… I could not imagine how parents who don’t have medical backgrounds feel.

Before his tonsillectomy, I found myself deep in a helpless pit. I could see Henry out of my reach completely at the mercy of a team that didn’t know him. I could picture him held down and alone and afraid. His only advocate was to be a nurse that very likely had a similar education about Down Syndrome as my colleagues of all sorts including myself: MDs, CRNAs, RNs, and technicians. That thought scared me.

I’ve been an operating room nurse for nearly a decade now. I know that the people who work in the operating room are there because they have a passion for it. Their hearts come to work pure at 5am to help your kids. But I know they probably had at least 4 or 5 tonsillectomy’s stacked and scheduled the same day in the same OR suite with the same surgical team as Henry’s tonsillectomy. I know it was just Tuesday for them. Another day of doing what they’ve done 1000 times before. It was routine to them just like trauma and neurosurgery is routine for me.

Time to make the doughnuts. Living the dream. But also wondering when their next break would be. Thinking about if they packed their husband and children’s lunches for the day and if they remembered to grab their own as well. Did they pay that bill that is laying on the counter? Maybe they are upset that they aren’t scheduled in the same OR as their work BFF that day. Frustrated that they are saddled with extra paperwork. Oh and teaching baby doctors how to operate… because if you don’t know, let me tell you: brand-spanking-new baby doctors begin their residencies in June every year. And Henry’s surgery WAS IN JUNE.

If your child’s hospital is a teaching institution, you can bet that there is an extremely new and likely clumsy resident lurking somewhere on your care team at any time. Everyone has to learn. I realize that better than anyone. Everyone has a first day. And, Momma, that first day is in JUNE for doctors. Kids with Down Syndrome are prone to infection. One slip in sterile technique can mean everything to your entire world.

So I started frantically searching for a guide to taking care of a child with Down Syndrome in surgery… nothing. Then I looked for a guide for taking care of a child with Down Syndrome admitted in the hospital….nothing. Finding any info (especially up to date) even in medical journals was extremely difficult. So I made it my mission that everyone would know the important physiological things about Henry. And I wanted to humanize him as much as possible… to make the team feel like they knew him. Because the team taking care of your baby only meets them once and sees them awake for maybe 10 minutes total.

I made an “All About Me” sheet for Henry. I put everything I could think of that may elevate and improve Henry’s care in the hospital. Their healthcare should be individualized across the board just like their IEPs for their education. One size fits all does not work for our kids in any aspect of their lives, but especially in healthcare. Annually over 250,000 deaths in the US are attributed to medical errors. Please take this information below as empowerment. I don’t want to scare anyone, but I want everyone to know what to ask for and how to prepare. Knowledge is power. You want your care team to be 100% in the know about everything there is to know about your baby.

Surgery To-Do List for Parents

  • Request a first start surgery time or as close to the beginning of the day as you can.

    • Most surgeries require your child to be “NPO” status for surgery- which means nothing by mouth usually after midnight the night before. The longer tummies go empty the likelihood for meltdowns steadily rises in my house. Keeping little ones as happy as possible before surgery has benefits for everyone.
      99% of nurses and doctors come to work with pure hearts, fresh and ready to tackle the day… but by the 12th hour and 5th surgery in their OR, they may be dragging, frustrated, and distracted thinking about their own families.
  • Request that the attending MD perform your child’s surgery without a resident’s assistance.

    • You may not be able to dictate that there will be absolutely no residents in your child’s surgery if it occurs in a teaching hospital. Most residency programs take at least 4-7 years depending on the specialty. There is usually someone who is at a senior level and about to be own their own as an attending themselves with hands on your child.
      But you can say “I do not want the resident completing my child’s surgery.” You can say “I want the attending physician completing the critical portion of my child’s surgery.”
      Everyone has to learn. I would just tell the doctor that you realize there are new people starting residency during the summer months and you’d prefer they just observe.
  • Request that a CRNA provide anesthesia care for your child.

    • A CRNA is a nurse anesthetist. They will have much more experience than a resident and is trained as a nurse first which is huge. Nurses are trained to be an advocate and MDs are trained to be an analyst.
      You will also have an Attending Anesthesiologist who will be present only for the very beginning and the very end of surgery. They are also important, but your CRNA or resident will be at your child’s bedside for the entire surgery.
  • Request that they bring you into the recovery room before your child wakes up.

    • It is policy in most places that you are to stay in the waiting room until your child is fully awake, but most of the time you can go in early.
      We’ve found if Henry wakes up and sees one of us first, he is so much more cooperative and calm. I have heard his screams from the waiting room before and it’s truly terrible- he will fight like a wild cat if he wakes up with strangers.
  • Request that everyone wash their hands before touching your child.

    • It may sound redundant and silly because everyone is supposed to wash their hands. As soon as you walk in, there are signs to remind everyone that hand hygiene saves lives. And yet, doctors and nurses are human too- we forget. Asking them to wash will not offend anyone, usually they are happy to be reminded.
      Make sure you wash too! Keeping some unscented hand lotion in your bag will help with the inevitable dry, chapped, irritated hands.
  • Remember to bring your kid’s go-to comfort item.

    • Children have limited to zero choices during this period. Be sure to bring something that makes them happy and feel safe. This can be a favorite pillow, blanket, stuffed animal, book, pajamas and socks, tablet/device, or toy. Bonus if you bring two items to let them choose for themselves.
      Before the day of surgery make sure you have a duplicate back-up of the item just in case.
      Be ready to sanitize with Lysol, toss is in the washer on the hottest cycle, or give it a ride in the dishwasher when you get home. Or just throw the item out and replace with the duplicate back up.
  • Pack extra supplies for you and your child.

    • If you are expected to stay one night, pack for two nights. Always pack for a longer stay: you never know how many sets of pjs you’ll need or if your child may need additional monitoring.
      You will also need to pack snacks for yourself. Most of the time food is the very last item on your mind but you need remember to pack provisions just in case you can’t leave the area. Remember to take care of yourself.
      Make sure you have chargers for devices and headphones.
      Bring a comfort item for yourself. Music, book, podcast, calming blends of essential oils spritzed on tissues (sometimes it helps me to smell citrus and lavender), mints/hard candy, gum…
      Having something to busy your mind and mouth can help alleviate anxiety.
  • Making a social story about surgery may ease anxiety in your child.

    • Chronological themed pictures of activities of the day can brace your child for expectations. Stock photos work well but if you have pictures of your child in these situations, use them! For example: A picture of them in the car seat, then the hospital, then them sitting on a hospital bed, nurse with a computer/clipboard, operating room, operating room staff wearing face-masks, and child waking up, hospital room, etc. A simple photo album on your phone can suffice if you don’t want to order a physical book through CVS or Shutterfly.
      You can also pretend play with stuffed animals to prep them for the day. You can even make a social story about the animal if you think they’ll enjoy it!
  • Make an “About Me” fact sheet to give to your child’s preoperative team.

    • A simple and clean fact sheet about your child can mean the world to your team and can make a huge difference in the care your baby receives.
      Include a cute picture of them at the very top with their name and birthday in large font. AND if they have allergies also list that in bold print. Allergies can get lost between the electronic medical records and the actual paper documents that go with your child.
      If your child is like mine- the game is up the minute they start trying to take vital signs. Including their current height and weight can help if you just can’t get an accurate measurement because of the “limp noodle” escape move. Having an accurate weight is very important. Almost all medications doses are calculated based on weight.
      Begin with an intro section focusing on your child’s unique strengths, calming techniques, and challenges.
      Include all up-to-date health history with insights into the special physiological needs.
      Plus points if you print it on waterproof/tearproof paper or have it laminated. Or you can print 10-15 copies and hand them out during your stay to anyone who touches your child.
      Henry really likes the sound of laminated paper being flapped around so at bare minimum this sheet has been a wonderful distraction for him during transport around the hospital.

    Below are of our Surgery/Hospital About Me documents.

    The first is the first general document I made 24 hrs before Henry’s first hospital admission with tips for nurses on the back about Henry’s specific diagnosis and some different physiological concerns that come with Down Syndrome.

    The second is a much cleaner version with more detail.

    Warrior parents, we have to be there for each other. I sincerely hope the view from my stand as a mother of a son with Down Syndrome and perioperative RN helps someone out there. Stay safe and stay alert.

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