Diffuse Cutaneous Mastocytosis.
On October 30th, 2014, at about 5:45 a.m., Tyler Grace came into my bedroom. With my eyes half open, I glanced to my right and realized Steven had already left for work. Tyler told me, “I pee peed a little in my pants because da balloons mom.” I thought to myself, “What is she talking about?’ Then, I remembered (DUH) it was Tyler’s third birthday and, keeping along with tradition, Steven started Tyler’s morning with the expected birthday balloons. In the past, we snuck into Jackson or Tyler’s bedroom and scattered balloons all over the floor. Steven thought this year, because Tyler was such as light sleeper, he would secure a bag to Tyler’s door to make the balloons fall on her when she opened it. Ahhh, yes, it all made sense. Since the balloons fell on her, they scared her, and Tyler peed her pants. Got it. Getting up.
I walked Tyler to her bathroom and realized I had a little water by my foot. I saw my doctor the day before and she told me I had three more days, if she had to put her money on it, until I would have baby number three. Darn it… I did not want this baby to be born on Tyler’s birthday.
I called the on-call doctor who told me if I didn’t feel a normal amount of movement over the next hour or so that I needed to go get checked at the hospital.
I spent the next hour pretending everything was normal. I spent time with Tyler in her bedroom and she pointedly told me she did not like her balloons. Her balloons were beautiful, but they weren’t purple. She wanted purple. Thankfully, she did enjoy her Elsa princess dress from my dear Mississippi friend Sarah. I sang Tyler “Happy Birthday” and the Danish birthday song my stepmom has always sung to me. She danced around and I thought about how Baby Catalano hadn’t been dancing this morning.
I called Steven and asked him to come home. I called my stepmom and asked her to take my other two children.
My stepmom arrived and left with my birthday girl and Jackson. I felt awful for missing Tyler’s birthday and all I could think of was how I did NOT want this baby to be born on her birthday. A short while later, my dad showed up at the house. He hadn’t realized my stepmom had already come and gone and the circus tune, “Do do do do do do do do do do,” started in my head. At that moment, in my head, I knew it was go time. There’s always that small bit of whimsical chaos right before it’s time to go have a baby. I knew that feeling two times before and I knew it wouldn’t be too long.
Steven showed up and we left for El Camino Hospital in Los Gatos. I absolutely LOVE that hospital. The nurses are amazing and the labor and delivery portion of the hospital are quaint. Plus, my Aunt Claire and Uncle Keith live right down the street, so I was looking forward to a visit from them.
As soon as I got to the hospital, I got checked in and a nurse told me that I had to be wheeled in a wheelchair to Labor and Delivery. I asked if I could please just walk, but she said, “No,” and explained it was hospital policy. I arrived at L&D and was shown to my grand suite. I was the first mother to have a baby in the newly remodeled room. I got into the room and it was much more modern then the rooms Tyler and Jackson were born in. The nurses gushed over the updated room and many said they’d never really been in there. I was disappointed. I wanted the old, “ugly” styled rooms, just like the ones I had before. I liked that grandma inspired floral wallpaper and I wanted that hideous rocking chair. I got over it and figured this time was simply going to be different and not what I had in mind.
I told the nurse what had happened in the morning. The nurse explained there was a test that would confirm whether or not my water broke. In my mind, I thought it hadn’t because it was nothing like when I had Jackson or Tyler. I told the nurse I did NOT want to have the baby on the 30th because it was my daughter’s birthday. I’m certain I got an eye roll from the husband, but I felt like he understood where I was coming from.
The nurse took the test, came back, and explained she had good and bad news. The good news was I was only dilated to one and the bad news was my water did break. I thought, “Dang it,” in my head and I wanted to shout it out loud. Really loud, out loud.
I made sure I made it known to our nurse that I really wanted to have the baby on November 1st. She contacted my doctor who said November was out of the question, but she would let me wait until tomorrow. “Uggh,” I thought, I did not want a Halloween baby either. I wanted Baby Catalano to have his very own special day, not Tyler’s birthday or Halloween.
The rest of the morning and day was uneventful. The highlight was when my stepmom, dad, Jackson, and Tyler arrived with balloons and cake to have a mini birthday party for Tyler. Shortly after, one other friend Jen stopped by to visit and all I could think of was my favorite Pretty Woman quote, “Be still like vegetables. Lay like broccoli.” Bam. I wasn’t going to move and, somehow, I was going to make it to Saturday, November 1st.
I talked to my best friend Thea on the phone and I told her my plan and told her how I was NOT having a baby until November 1st. I told Thea how I was told I wouldn’t be allowed to wait until November 1st. Thea laughed and said, “They obviously don’t know you.” I’m fairly certain I cried when I talked to my stepmom and dad because I didn’t want the baby to come. Both of them basically reiterated what I already knew to be true, which was the fact I needed to get my head out of my ass, stop caring about the stupid date, and do what I needed to do in order to have a healthy baby. Blah, blah, blah… words I did not realize were so meaningful at the time.
That night, my mom, aunt, and uncle joined Steven and I for dinner in my remodeled, fancy hospital room. Steven and Uncle Keith grabbed takeout from Double D’s and Steven got a parking ticket, while doing so. That was no shocker to me, but Uncle Keith loved the fact that it gave him a good baby name idea. Proudly, Uncle Keith suggested “Parker” for our new baby, if it was a boy.
Let me tell you a little something about Steven and I and baby names… we suck at naming our children in a timely manner. Steven and I named our son five days after he was born, after we had already gone home. Steven and I named our daughter about a week after she was born and in the NICU. I was entirely determined to name baby number three right away. Steven and I had thought about Mason the most, but I still wasn’t satisfied with it. A couple nights prior, I had mentioned Wyatt to Steven after reading our baby name book for the eleventy-billionth time. Steven liked it and, for some reason, that was the name I thought was going to perfectly fit our unborn child.
Everyone left and, before we knew it, midnight arrived. Woo hoo! I made it past Tyler’s birthday. Goal one was accomplished. Then, the nurse came in and explained it was time to get things moving, per my doctor, and get some Pitocin. I was pissed and explained I did not want to have the baby until Saturday, November 1st. I asked the nurse if she thought I could make it 24 more hours. She basically explained she thought I was nuts, but said she would put me on the lowest Pitocin dose possible. I pouted because I knew my body and knew, based on my other deliveries, this baby was going to come as soon as I got that medication.
At around 11 a.m., my “real” water broke. The big one, just like my water broke with Jackson and Tyler. At that moment, I knew it was on like Donkey Kong and I could say, “C’est la vie,” to my November 1st baby. I realized my late Aunt Nancy, one of my favorite family members, was smiling in heaven. Her birthday was October 31st and, although I managed to avoid her birthday with Tyler, Nancy was not going to let me get away with it again.
Contractions finally came and lawdy they came strong. In the past, my friend Jess and I made fun of those women who moaned while in labor and oh.my.gaw. I.was.one.of.those.women.
I was ready for my epidural and, as soon as I got it, I had instant relief. I was back to relaxing and enjoying my labor.
Shortly after 1 p.m., I was ready to have baby number three. I was so excited about meeting him; I totally forgot it was Halloween. All I could think about was whether it was a girl or boy.
It took me seven minutes, my husband’s encouragement, and three pushes to have Baby Number Three. I cannot remember who said it, but I think my husband said, “Boy,” and my heart felt full. Although my husband had told me he would be happy about a boy or girl, I knew he wanted a boy. I was thrilled.
A few moments passed and I looked at my sweet baby and noticed he had odd bumps on his face and head. I immediately internally freaked out and was brought to a dark place that I had been before.
One day and three years ago, I had Tyler Grace and, although I tested negative, she was born with Group B Strep. It caused her to get sepsis and she danced with death. I was only allowed to look at her during her first few days in the NICU. I couldn’t talk to her because it would stimulate her too much and I couldn’t touch her. She was inside an astronaut-like bubble.
Because of my birthing experience with Tyler, the hospital already had the charge NICU nurse in the room, just in case something went wrong with the new baby.
When I saw my sweet boy, I shuddered at the thought of him having to go to the NICU and those dreaded words came… “You can hold him for just a minute, but we need to take him to the NICU.”
The nurses handed me my beautiful boy and I immediately knew his name was Wyatt James. The doctors asked me, “Do you, your husband, or anyone in your family have any history of skin problems?” I racked my brain and couldn’t think of anything. All I could say was, “No.”
They took my sweet baby boy away and Steven went with them to the NICU. I had been through this before and I was terrified. I called my dad, cried, and asked him to come right away.
Time passed and it seemed like hours. I’m honestly not sure when Steven returned to my room and my dad arrived, but I was happy the two most important men in my life where both there with me.
A pediatrician I had never met came in the room. She started talking to me about viruses. I sat there, alone, and felt so puzzled. What was happening? I felt totally responsible for everything our sweet boy was experiencing. I thought about the fact that I did NOT want him to be born on Halloween, which now seemed like a ridiculous thing to worry about.
The pediatrician asked me to sign a consent form, which would allow her to photograph our son and send the photographs to a dermatological specialist. Of course, Steven and I signed immediately.
At some point, I was told I could nurse our son and I felt overjoyed. In my mind, I knew breastfeeding was something really good I could do for our little man. I nursed him and felt so bad as I looked at him with eyes filled with love.
I pointedly told Steven I wanted to name our son and I explained I did not want him to be nameless like our other two children were. I told Steven I looked at our son and, as soon as I did, he was Wyatt James. Steven agreed and our handsome boy had a name. I felt content because that was the first time we named a child quickly. It felt like quite an accomplishment.
Around 10 p.m. a dermatological specialist actually came to the NICU to see our sweet boy. For about 15 minutes I listened to her explain how she thought our son had a virus and I could not wrap my head around this information. After about 15 minutes, the specialist stopped herself and told me something like, “I think I’ve been fooled. I don’t think this is a virus at all. I think this is mastocytosis.” Her words seemed empty. How could she be certain my son had something and change her mind just like that? Then, she told me our son was going to be transferred to Stanford.
For about ten minutes, the specialist explained to me why she thought our son had mastocytosis. She rubbed her hands on his skin, made it turn bright red, wheal-and-flare, and made his bumps worsen. All I could think about was that I wanted her to stop hurting my son. I doubted her masto-whatever diagnosis because she had just seemed so certain it was something else.
The next day, in the morning, Jackson and Tyler got to meet their baby brother through a glass window. They stared at him for a few minutes and I could see both of their faces light up. They blurted things out like, “He’s so cute,” and, “I love Baby Wyatt.” I felt so guilty that Jackson had to meet another sibling through that same glass window and I wished I could change it.
A special transport team from Stanford arrived to take Wyatt. We had to sign consent forms and he got all hooked up. I wanted to cry as I thought about the fact that his first drive was in an ambulance, instead of home with us. I felt devastated.
My doctor arrived to discharge me from the hospital. I got my pump, a prescription for Motrin, signed a whole bunch of papers, and got on my way to be with Wyatt at Stanford. All of this was a lot, especially after having given birth less than 24 hours prior.
Steven drove me to Lucile Packard. When we arrived, one of the transport persons called me and told us Wyatt was inside the ambulance in front of Lucile Packard.
Steven and I found the ambulance and sat with Wyatt for about an hour and a half. Apparently, Lucile Packard staff changed their mind about letting Wyatt into the NICU. Because Varicella aka chickenpox was a possibility, the Infectious Disease persons decided Wyatt needed to be in isolation.
Finally, Steven and I got to go with Wyatt to his room. Wyatt was on a floor that had mostly older children. It was obvious that the staff did not frequently deal with babies. I didn’t really care because I was going to be allowed to board with Wyatt in his room and being with him was all that mattered.
As a mom, we always do whatever we have to do in order to take care of our littles. I could’ve cared less if I had to sleep on a cardboard box, so long as I could be with my sweet Wyatt. I also did not care that I had just given birth and was still healing. I simply felt so blessed I was allowed to stay with him and was grateful for Lucile Packard.
Over the next five days, I met several doctors who were assigned to Wyatt’s case. They were called, “Team Blue.” Quickly, the faces became very familiar. Wyatt also had a “derm” and “optometry” team. “ID” aka Infectious Disease was another group that frequented Wyatt’s room. Each time these strangers came into Wyatt’s room, they had to garb up… hospital gown, facemask, and gloves were required by all who entered, including my husband. I was the only one not required to wear all this stuff.
There were a few differentials and the least likely was Mastocytosis. I was also told it could be none of the things the doctors suspected. I felt like I was on an episode of House. The doctors wanted to do different tests to rule things out.
The tests were exhausting and absolutely horrible to watch. The doctors would say things to me, such as, “Now would be a good time to go for a walk,” and I would respond with, “No, that’s okay. I’ll stay here with Wyatt.” I knew the doctors were hoping I’d leave, so they could do what they needed to do without my presence, but all I could think about was if sweet baby Wyatt had to endure the tests, the least I could do was be present for them.
There were lots pokes and prods and bunches of needles. Wyatt had blood test after blood test. At one point, during a blood test, the technician couldn’t find his vein in one of his arms. She moved that needle around like a snake in Wyatt’s arm and she failed. She moved to the other arm and the same thing happened. She failed again. She moved on and decided to do a heel prick. That seemed like his billionth heel prick. Awful.
At one point, I noticed Wyatt’s hand was purple and his arm that had an IV had blown up like Will Smith’s face in Hitch. I’m not a doctor, but I knew something was not right. I pointed it out to the nurse and she kind of tinkered with his arm and IV tape. I asked the nurse to please fix or remove the IV. About an hour later, it was removed and, thank goodness, because the IV had failed and the medication being given to Wyatt was being pumped into his arm, instead of his vein.
I think the worst for me was the skin biopsy. The doctor used a circular instrument to somewhat punch a hole in his skin, lift his skin with tweezers, and cut it off. Then, they used the hook needle and stitched him up. I nursed Wyatt right before the procedure and amazingly my little love slept through the entire thing.
The most awful procedure for Wyatt was the lumbar puncture, which is more commonly known as a spinal tap. Wyatt didn’t have to get one of these. He had to get two and, devastatingly, both failed. Wyatt is not a crier, but he certainly was during this procedure and it was terrible to watch him being forced to curl up in the fetal position.
When I think about the number of times Wyatt was pricked with something, I get immediately exhausted. I can only imagine what his little body felt and his new mind experienced, especially considering he was only a few days old.
We were at Lucile Packard for five days and I still had no answers. “Team Blue,” told me the same thing they had told me, since we arrived. “Wyatt is our now six-day-old male born by spontaneous vaginal delivery at term with erythematous vesicles and patches diffusely over forehead, scalp, upper and lower extremities, and abdomen… We are still waiting for test results and are hoping to have them soon.” Emotionally, I was exhausted from not knowing what Wyatt’s diagnosis was. I was exhausted for Wyatt. Poor.little.man.
I missed my sassy Tyler and curious Jackson. In a three-day period, I only got to see them one time, for a short time. During my visit with them, I felt overwhelmed with sadness because we weren't together as a family.
Wednesday arrived and, as Murphy’s Law would have it, the doctors finally had some answers… a diagnosis. They seriously arrived with the news of a diagnosis the one and only time I decided to leave on my own to go grab lunch. I left Steven with Wyatt in a quest for some sandwiches at Whole Foods. I strictly instructed Steven to call me if the doctors came in for any reason whatsoever. My phone rang; I picked up, and braced myself for the news. I did not know what the news was going to be, but I was ready for it, whatever it was.
Steven said, “They have a diagnosis. I’m going to put you on speaker phone.” I immediately felt tears streaming down my face and I was so angry with myself for leaving the hospital for a stupid sandwich. I asked the doctor if I should turn around to hear what she had to say and she apologized and explained she had to be in clinic in ten minutes, so I wouldn’t make it back in time.
The doctor said Wyatt had, “Cutaneous Mastocytosis.” I heard her, but I asked her to repeat herself. I wanted to make sure I was hearing everything right. Now Wyatt had a diagnosis, but what did that mean for him?
I returned to the hospital and a, “Team Blue,” member explained Cutaneous Mastocytosis and what it would most likely mean for precious Wyatt. First, she explained that Wyatt’s condition was a rare skin disease, a disease of his white blood cells. When I asked how rare, she kept saying, “Rare.” When I asked how many babies were known to have Wyatt’s condition, she explained just over a hundred, but that it was extremely rare for a baby to be born with it. She cited a study with ten newborns who had the condition. She explained the doctors strongly believed Wyatt had the cutaneous type, which was skin affecting only, as opposed to systemic, which would affect his organs. This was very positive news.
The doctor explained most children who had Cutaneous Mastocytosis outgrew the lesions around the age of three or four and the pigment spots during puberty. Awesome! We have a very positive, hopeful prognosis. She further explained that, although the condition was not hereditary, they did not know what caused it. She told us Wyatt would have to take some daily medications. Also, one of the biggest risks for Wyatt, because of his condition, is anaphylactic shock. Therefore, we would have to carry an EpiPen Junior with us at all times. The doctor explained they never had to prescribe a baby an EpiPen and weren’t entirely certain what would happen to Wyatt if we had to administer one. The doctors explained the benefit of the EpiPen, in their opinion, outweighed the risk of not using one.
My husband handed me a list of things that degranulate mast cells in most individuals with mastocytosis. The first line on the list stated, “Exercise, heat, cold, friction, and sunlight.” I thought, “Ummm… isn’t that all things normal in life?”
Next, my husband handed me an article, which said, “Mastocytosis is characterized by an increased number of mast cells with an abnormal growth and accumulation in one or more organs. In most children mastocytosis is limited to the skin (cutaneous mastocytosis)…”
At this point, I hadn’t shared any of Wyatt’s pictures with family or friends, aside from one taken from somewhat afar, because I knew people would ask me about Wyatt’s lesions. I wasn’t prepared to answer any questions, since the doctors hadn’t diagnosed him yet, and I didn’t really know what was going on with his tiny body.
My thoughts on Wyatt’s appearance: Our son is so handsome and so BIG. I love his round face and adorable shape of his eyes. He is a little tank. Given all he has been though, he’s our WYATT WARRIOR.
The doctors did not have a lot of answers for us because little is known about babies born with Wyatt’s condition. We were able to leave the hospital the same day he was diagnosed.
I feel beyond blessed to live in the Bay Area and am forever thankful to be in Lucile Packard's backyard. The doctors at Lucile Packard were phenomenal.
Jackson and Tyler got to meet Wyatt in person for the first time when he was six days old. It was precious to see Tyler touch Wyatt’s head and beg to hold him. Jackson repeatedly told me, “Mommy, your baby is so cute.” Jackson asked about the, “Bumps,” on Wyatt’s head and I explained what they were. I told Jackson that God gave Wyatt really big kisses, so everyone would know how much he was loved.
Adjusting as a family with a newborn is always a challenge, but this time it seems much easier. I remember a mother of three telling me, “Brace yourself. With three you will be outnumbered.” So far, thankfully, I don’t feel that way. I feel overwhelmed with blessings and know God carried us through the first week of Wyatt’s life and know He will continue to do so. I am so grateful for this new life God has blessed us with.
Shannon, Wyatt's Mom
“I prayed for this child, and the Lord has granted me what I asked of him. So now I give him to the Lord. For his whole life he will be given over to the Lord.”
~1 Samuel 1:27-28