Caring For Baby Gwynevere with Texas Children’s Hospital

I’ve talked about this quite a bit on my Facebook page, but the last five weeks have been such a whirlwind that I haven’t sat down and tried to write anything more detailed about Tiny Gwynevere and her scary health issue.

It was Easter Sunday and we’d just gotten home from church. I was getting lunch ready and Jason was changing Gwyn out of her cute little Easter dress and into a cozy little onesy.

That’s when he saw it. Our beautiful, perfect, easygoing baby had a mass the size of a large marble in her neck. You could see it clearly when she turned her head, and it looked purplish.

My first thought was, “Oh my God, she has some kind of aneurysm!”

We spent the next five hours at the Methodist Hospital ER. The doctor there said some frightening words like “tumor” … “biopsy” … “surgery.”  Then, “Go home,” he said, as reassuringly as he could under the circumstances, “and call her pediatrician first thing in the morning.”

Monday found us in Dr. Thomas Worrall‘s waiting room at Texas Children’s Pediatrics Lakewood. Thankfully, he did not think the growth was likely to be cancerous. He guessed it was some kind of cyst that had formed around a lymph node. Since the thing had sprung up literally overnight, he scheduled us that same day for an ultrasound at Texas Children’s Hospital in Katy, and then an ENT appointment at Texas Children’s Pediatrics Cy-Fair.

It was an exhausting day. I’m so glad Jason was able to take time off work, because it would have been incredibly difficult on my own. I think I had at least two minor panic attacks in the car between appointments. I tend to breath shallowly and hold my breath when I’m stressed.

The ENT (who is also an otolaryngology surgeon), Dr. Daniel Chelius, stayed late after almost everyone else had left just to see our little girl. He looked at the brand new ultrasound images, and confirmed Dr. Worrall’s diagnosis of a cyst. This was a lymphatic cyst with multiple chambers, each having a dark spot in the middle (we later learned these were hematomas from the walls of the cyst bleeding).

Gwynevere had probably always had this cyst, even way back when her lymph nodes were newly formed in utero. It was a birth defect, but had only started to grow once Gwyn was exposed to her first virus, and her lymphatic system was activated.

She would eventually need surgery. The cyst would continue to grow. We needed to delay surgery for as long as possible because, the smaller the baby, the greater the risks. If she gets another virus, the cyst’s growth would likely accelerate.

Dr. Chelius was incredibly reassuring, and both Jason and I knew we were working with a very knowledgeable and experienced doctor at one of the best pediatric networks in the world. Nevertheless, things we needed to watch out for included a lot of frightening things, such as wheezing, difficulty breathing, difficulty swallowing, fever, and pain.

I was a nervous wreck.

I was terrified she’d have trouble breathing at night and that I wouldn’t wake up to help her. I began sleeping very lightly. I’d get out of bed two or three times a night just to make sure her head wasn’t slumped to one side and her little airway was straight.

Over the next couple weeks Gwyn did begin developing swallowing difficulties. Whenever any pressure was put on the cyst, it would get pushed into her esophagus, making her gag and cough. This made nursing very stressful. Eventually she even began waking up from sleep every time her head lolled to one side and put pressure on the cyst.

On April 4, we did an MRI. Thankfully, the cyst was found to be located only in the fatty tissue of her neck. It wasn’t wrapped around the esophagus, and didn’t have any major blood vessels weaving through it. This meant it was unlikely it would constrict her airway, and that surgery wouldn’t be as complicated as it could have been.

However, that didn’t change the fact that feeding was getting more difficult for little Gwyn, and she was frequently uncomfortable and restless when she slept. The cyst continued to grow. My stress level was very high. Sleep deprivation wasn’t helping.

A very dear friend gave us a Snuza monitor that would alert me should Gwynevere ever stop breathing or moving for more than 20 seconds at night. I cannot tell you how much better I slept after that. Yes, I still had to get up every 3-4 hours with her, but falling back asleep, and sleeping more deeply, were much easier.

Then Gwynevere started making a throaty, gravely, snoring sound whenever she slept. That set me on edge. We saw Dr. Worrall again, who agreed that the cyst had grown quite a bit, and recommended we see Dr. Chelius again.

Dr. Chelius squeezed us in to see him and Dr. Tara Rosenberg (another ENT & Otolaryngology surgeon) at Texas Children’s Hospital in Houston’s world-renowned medical center. They scoped Gwyn’s throat (which involved sticking a thin tube with a tiny camera up her nose and into her throat) so see if the cyst was constricting her airway.  Thankfully, it was not. Gwynevere, however, was very unhappy!

Then, on April 18, poor Gwyn woke up with a blotchy red rash all over her tiny body. She’d been especially fitful the night before, and I suspected that the rash was viral. Remembering what Dr. Chelius had said about any viruses she contracted possibly making the cyst grow faster, I gave him a phone call. I also emailed his photos, and he told me to see Dr. Worrall that same day.

(By the way, every Texas Children’s doctor we’ve seen has given me access to their direct phone numbers, email addresses, and nurses’ contact information so that I can keep them updated on Gwynevere’s status).

It was around 2:30 PM that I talked to Dr. Worrall’s nurse, and she squeezed us in for 3:00 PM. Now, at 2:30, Elowyn (my 3 year old) was wearing a Queen Elsa Halloween costume, and Leianor (my 1 year old) was completely naked (she’s potty training). So, in less than 15 minutes I got both of them dressed, with shoes on and hair brushed, and in the car.

Seriously. I deserve some kind of medal for that.

Dr. Worrall confirmed that the rash was in fact viral, and recommended we watch the cyst very carefully for accelerated growth.

After filling Dr. Chelius in, he set us up with an appointment the very next day at Texas Children’s Hospital with Dr. Daniel Ashton, a pediatric radiologist. Dr. Ashton evaluated Gwyn for a procedure called sclerotherapy. It involves a series of injections into each chamber of the cyst. The injected medicine will cause the cyst to close in on itself and seal itself shut so it can’t swell up and become visible or bothersome again. For all practical purposes, it will be gone … although I suppose if she ever gets another MRI done they might be able to see it on the scan.

Much to my relief and elation, Dr. Ashton says that Gwynevere is a very good candidate for sclerotherapy. If it works, she won’t even need surgery. While it’s not as invasive as surgery, it’s still no walk in the park. She’ll need to stay in the hospital at least overnight so they can manage her pain and monitor her reaction to the anesthesia. I’ll be with her the whole time so she’s not scared.

We don’t have a solid date scheduled yet for the procedure, but it should happen sometime early next week. After it’s done, and we’re home from the hospital, it will still take her about two weeks for the swelling to go down. I will update you here (and on Facebook) as I’m able.

Love,

Jenn