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, pink color spots on her skin and even on her face. She was uncomfortable to say the least. I can remember her crying all day and night, which seems 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 uncomfortable from the rash being itchy or if it was some other kind of pain. She couldn’t sleep and was inconsolable most of the time. We naturally went to the obvious- we changed our eating habits, laundry detergent, soaps, lotions and clothing materials. 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. Until we took her to a dermatologist who did a skin biopsy. The skin biopsy showed that this rash symptom was hypocomplementemic urticarial vasculitis (WTF?), yeah that’s pretty much what I said. She told me she had never seen this type of result and I should see an immunologist or rheumatologist. So I continued on to see both, and after doing extensive blood work they were both stunned at the results they were seeing. I remember the first time I called to get an appointment, the nurse told me that the doctor doesn’t take patients that young…wait what, huh? She said that auto immune deficiencies are rare for children let alone babies. I started crying immediately and begged for help. She put me on hold and came back to tell me he would see her.
So, after all the doctor visits and blood tests, they came to the findings that Layla only had one part of her immune system. The other part was “Zero”. She has high inflammation and the rash was only a part of it. The inflammation was inside her little body too. She could have been having tummy aches, headaches, joint pain, inflammation in her eyes, the list goes on. This news was heartbreaking, we were getting a glimpse into what she had been crying about for so many months before…and still, there were no answers as to why…and how can we take her pain away. I wanted to scream and yell for someone to take her pain away…because as her mom…I couldn’t.
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. My baby was so unhappy and I knew she was hurting…but I couldn’t do anything about it. I watched the rash effect more and more body parts; her eyes would get so red she could barely open them, her joints (knees, 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 but the daily and nightly pain was unbearable.
One warm fall day in October 2013 (1 month before her 1st birthday), I decided to take the girls to the park to get out for a bit. 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. This was my second child, so a little fever didn’t make me too nervous. Though, 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. And that was the moment, when our worst fears unfolded.
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. As soon as we got to the ER the nurses took us directly back (and 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 since it was the middle of the night she felt like 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.
When the doctor in the ICU was talking with us, he had a calming tone and for the first time I felt like we were in the right hands and she just needed time to get better. They were just giving her antibiotics, IV fluid and monitoring her but they said, if anything changed he would let us know. It was the middle of the night, so Layla fell asleep and so did Rob and I. It was 1:00am and we were woken up by the doctor. His voice seemed different , he was talking fast and started to seem a little panicked. “We need to put in a tube so that in the case her airway closes we will still have access”. This couldn’t be happening…we cried and held her little hands and prayed hard! I broke down…(not for the first time or the last time). But I remember this breakdown, seeing her for the first time after that, all the tubes, machines, IV’s…I just wanted to hear her cry again (I wanted her to be free of pain for so long, but not like this). She was sedated. I couldn’t pick her up and hold her…I just wanted to hold my baby.
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 it 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.
The upcoming hours seemed to be a rapid and desperate fight. She was on a ventilator, intubated, multiple IV’s, all the strongest medications. Layla’s daddy 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. He wasn’t coming out of this without his baby. She kept progressing for the worse. 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 won’t make it. I couldn’t breath…I didn’t want to breathe. As parents we were shattered. My heart was broken and I was so scared for my baby.
The Doctor suggested “ we need to do a procedure called ECMO. ECMO is a large plastic tube inserted into large blood vessels in the neck”. Once we agreed. A nurse had a thought that since Layla had been laying on her back for so many days she wanted to turn her to her tummy while they moved her to the surgery room for the procedure. Meanwhile we were signing papers to ok the surgery.
As the Doctors were getting ready for the ECMO surgery, all I can remember were all the sounds- The heart monitor, the arguing between the teams of physicians, the harsh water pressure as they scrubbed in. It was loud. The were teams discussing their plans, the doctors were scrubbing up, and they were 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).
There must have been 20 doctors. 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. It seemed to be quiet for a minute and I was so confused as to why, at that moment they were all still. Was something terrible happening? I wanted to hear the chaos again so I knew she was still here. 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!” And 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…The doctor came out and explained, that her oxygen level was up slightly. He apologized for the commotion, but we needed to wait. She hadn’t shown any improvement since we arrived 10 days earlier. Minutes away from a doing a life changing surgery, of opening her neck to insert a tube, she showed us she wasn’t ready for Heaven. The doctor said our warrior was 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 and the Doctor that made the decision to wait. God decided it wasn’t her time. 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 breaths.
We had a long road of recovery since she went through a few months of drug withdrawals and needed to gain her strength back. But she 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