Layla was born in November 2012 a happy, healthy baby girl. The minute she was born she completed our family of four. Her big sister, Presley was over the moon seeing her and holding her for the first time.  After 6 weeks at home we started noticing a rash all over her little body. The rash wash slightly raised, and pink in color. It appeared all over her skin (even on her face). She was uncomfortable, to say the least. I can remember her cry, which might have seemed “normal” since she was a baby, but this was different. It wasn’t a sad baby cry, it was a painful scream.  I wasn’t sure if she was in pain from the rash being itchy or if it was some other kind of pain. She couldn’t sleep and was inconsolable throughout the night.

We naturally went to the obvious- we changed our eating habits, laundry detergent, soaps, and lotions and even went to all 100% organic cotton clothing. When there were no improvements we took her to the doctor (over 10 doctors and specialists over the first year). The first few doctors said that her blood work looked normal, and it might be an allergy or viral infection that may take time to clear from her system. They told me to wait it out for a couple months. Obviously we didn’t listen. We knew in our hearts, that this was something that needed attention quickly.

The following day, we took her to a dermatologist who did a skin biopsy. The skin biopsy results came fast; they showed that this rash was called hypocomplementemic urticarial vasculitis (HUVS).  What the?! I thought to myself. The doctor told me she had never seen this type of result in a child, let alone a baby and suggested we see an immunologist and rheumatologist. So we continued on to see both.

I remember the first time I called to get an appointment with a pediatric rheumatologist. The nurse told me, “Sorry … the doctor doesn’t take patients that young.”

“Wait what? The dermatologist just referred me to see Dr. Reiff.”

“HUVS was probably a mis-diagnosis, because babies can’t have this,” she said.  

“You don’t understand … my daughter is in pain and we are desperate for help!” I said crying.  She put me on hold then came back to tell me Dr. Reiff agreed to see Layla.

After doing extensive blood work, the doctors were stunned at the results. They kept telling me it was impossible and there has to be something else causing this.  

For 6 months our research continued. Endless doctor visits and blood tests.  Eventually they concluded that Layla only has one part of her immune system functioning. Her complement system was “zero”.   They determined that HUV was only a symptom of something else we needed to figure out.

With all the information we were getting… it was most important for me to understand what Layla was feeling. We learned that the pain she was feeling was inflammation. It was affecting her inside and outside. She had been living with constant abdominal pain, headaches, joint arthritic pain, eye inflammation, kidney inflammation, and the list goes on.

This was heartbreaking; we were getting a glimpse into what she had been crying about for so long. And yet still, there were no answers as to why or how we could take her pain away.  It was not only a living nightmare for her but for us as parents as well.  I wanted to scream and yell for someone to help her. How can I just watch her everyday with tears in her eyes, staring back at the one person who is supposed to protect her? I couldn’t help her…as her mom, I couldn’t protect her.  

It seemed like with every Doctor conversation, every test result, we were going deeper and deeper into this hole of scientific confusion that I couldn’t understand. I started researching the different vocabulary I was hearing; C1q, AH50, CH50, HUV, Complement system, ugh! I was spiraling in my search because there weren’t any other families going through it. One story I found seemed to have similarities, but as I read on it proved to be different… and that little girl passed away at 10 years old from her disease. Everything I researched and read all ended in fatality. I had to stop.

We comforted Layla the best we could; as her eyes would get so red she could barely open them, her joints (knees and knuckles) started getting so swollen it seemed painful to move them. She would have moments of smiles and I could see her little light trying to shine through. She wanted to be happy, she wanted to smile and laugh. There was no pattern as to when or why she would become inflamed, but it was most days with some worse than others.  There were always so many precautions we had to take when ever we were in public or when we had visitors. We had signs on our door instructing people to remove their shoes, and wash their hands (the proper way). We constantly covered every surface she touched, like swings or shopping carts, high chairs or benches. It was a struggle for us to balance allowing her to see the world while keeping her safe. 

One warm fall day in October 2013 (1 month before her 1st birthday), I decided to take the girls to the park.  Layla found such joy watching her big sister playing on the playground and loved to be pushed on the swing. After about 30 minutes at the park Layla started acting irritable and came down with a low-grade fever. With all that we’d been through a little fever didn’t make me too nervous. But it started feeling different pretty quickly. She seemed to be weak and just wanted to lay down. She was getting weaker as the minutes passed.

When my husband Rob got home from work the look on his face scared me. “Lynette, look at her neck! Look how swollen it is … her neck is one with her chin.”

That’s when panic set in. How could I have missed this?  I was home with her all day, and I was so busy monitoring her fever, that I missed the fact that she looked completely different. At that moment we didn’t quite know it yet but our worse fears were about to unfold.

The drive to the hospital was long…we prayed the entire way there and asked God to protect our baby girl. We arrived at Children’s Hospital Orange County at 8pm. As soon as we got to the ER the nurses took us directly back.  If you are familiar with the ER and the waiting process, you know that “no wait” means the nurses think it’s probably pretty bad.

We saw the first doctor and he wanted to do a ton of tests. Pretty quickly he came back to us and he really couldn’t find what the culprit was. But nevertheless he wanted her to be admitted. While they were going through the admitting process the nurse was noticing her neck seemed to be swelling more and she felt like her gut was telling her that she needed closer monitoring in the ICU. I can remember holding her over the next few hours and feeling that she was becoming weaker. They drew marks on her neck so they could track if it was getting worse.

The doctor in the ICU seemed confident.  “I assure you both our team is here to give Layla the best care and do everything we can to help her,” he said in calming tone.  He talked with us for an hour and made sure he understood her long history of complications. For the first time I felt like we were in the right hands and she just needed time to get better.

Her blood work showed that she had a bacterial infection called strep pneumococcal. Because, I had told them all about her blood tests and immune deficiency they were able react and treat her. They put her on all the medications to fight the infection but the bacterial infection progressed so quickly. The side of her immune system that “she didn’t have”, is the side that fights bacterial infections. So we could only rely on the medication antibiotics, IV fluid and monitoring her. The doctor assured us if anything changed he would let us know. Being that it was now the middle of the night, Layla fell asleep and so did Rob and I.

At 1:00am when we were woken up by the same doctor, only his voice seemed different. In a rapid panicky tone he said, “We need to put in a tube so that in the case her airway closes we will still have access.” Rob and I awoke in shock. This couldn’t be happening… all we could do was cry and held her little hands and prayed hard!

A team of doctors and nurses came in and asked that we leave the room. Minutes passed then time stood still and I broke down; not for the first time, or the last time. But I remember this breakdown so vividly. Seeing her for the first time, all the tubes, and machines, IV’s encompassing her little body. I wanted her to be free of pain for so long, but not like this. She was sedated…unconscious.  I couldn’t pick her up, I couldn’t hold her…I just wanted to hold my baby.

The upcoming hours and days seemed to be a rapid and desperate fight. She was on ventilators, a few different types because they kept escalating the intensity, intubated, multiple IV’s, all the strongest medications.

Layla’s daddy Rob is the strongest, proudest man I know. I watched him crumble into someone I didn’t recognize. His voice, his face, his tears, his eyes, he was shaking, he was broken. We were not coming out of this without our baby.  

She kept progressing for the worse. After a few more days, the Doctor came to us again and said we were losing her quickly. The infection became sepsis and her lungs just were not working. He said if we don’t act quickly, she wouldn’t make it. I couldn’t breathe…I didn’t want to breathe.  

“We need to do a procedure called ECMO. ECMO is a large plastic tube inserted into large blood vessels in the neck.” The Doctor shared all the risks, along with the tiny bit of hope for success.  Rob and I agreed to do whatever they thought was best for our baby girl. Just as the team was about to prepare for the procedure the nurse who had been working closely with Layla spoke up.

“Before we do this … why don’t we turn her on her tummy since she’s been on her back for so many days?”  The team agreed it didn’t hurt to try so they adjusted Layla onto her stomach while they moved her to the surgery room for the emergency procedure.  Meanwhile Rob and I were signing papers to approve the surgery.

As the Doctors were getting ready for the ECMO surgery, all I can remember were all the sounds- The heart monitor, the discussions between the teams of physicians, the harsh water pressure as they scrubbed in. It was all so loud. There must have been 18 physicians. The teams were discussing their plans, the doctors were scrubbing up, and it was all moving so quickly. It felt like a nightmare and I was watching someone else’s story play out. This could not be happening, not to our baby girl.

 Once they rolled her into the larger surgical room (on her tummy) I remember hearing a man’s voice asking to check her stats one more time. I couldn’t see in the room, but it seemed to be quiet for a minute and I was so confused as to why. At that moment you wouldn’t hear a pin drop because they were all so still. What was wrong? Was something terrible happening? I wanted to hear the chaos again so I knew she was still in there and they were still working to save her. Everything had been happening so fast and for that moment, the world stood still.

All of a sudden I heard a yell “Get out! Everyone out!”

We watched person after person leave the room. Rob and I sat outside the room and I could feel and hear my heart pounding. It was the quietest it had been in hours. It felt like the longest minute of my life.

I looked up to hear the doctor explaining to me “Layla’s oxygen level are up slightly.  I’m sorry if we scared you in there with all the commotion, but we just needed to wait.”

Layla hadn’t shown any improvement since we arrived 10 days earlier.  But minutes away from a doing a life or death surgery … she showed us she wasn’t ready for Heaven. The first ICU doctor we met when we got to Children’s Hospital, came over to us and said, “Our warrior is still fighting.”

Until this day, I believe with all my heart that God was watching over Layla’s Nurse and her Doctor that day. The nurse who made the decision to simply turn her on her tummy and the Doctor that made the decision to wait. We watched Layla make a miracle happen that day and those weeks to come. Doctors and nurses from all over the hospital were coming over to see who they called the “Miracle girl” … our miracle girl.  She was soon waking up and I remember holding her for what seemed like the first time. She was an angel in my arms and every breath she took it felt like I took my first.

We had a long road of recovery the following months.  She went through a few months of drug withdrawals and she needed to gain her strength back. Layla was released from the hospital days before her 1st birthday.

She was given back to us, and meant to stay here and move mountains.

~Life With Layla Rae