May 14, 2018. My husband and I were overjoyed to welcome our daughter into the world. Our son, Sawyer, was born just 17 months earlier, so this meant our family was almost complete. We were excited on the drive to the hospital that morning, looking forward to meeting our precious little girl.
I was having a planned C-section, as I’d had a previous Cesarean and also had placenta previa (a complication where the placenta tears away from the uterus). So we were a little disappointed to arrive at the hospital to be told there’d be a delay of a few hours.
Never mind. While we waited, we spent the time looking at pictures of our son and imagining what our perfect little girl would look like. As far as our obstetrician was concerned, we were having a perfectly healthy baby – she was just being brought into the world three weeks and one day early. I was looking forward to having her in my arms – Sawyer was a NICU baby, so I hadn’t experienced the joy of holding him straight after birth.
My husband sat beside me, and we were ready to go. I felt the pressure as they cut into me, and before I knew it there was a loud cry. Our little girl was alive and in the world. I could finally hold her and kiss her. Halle had arrived!
“The doctors say she isn’t normal,” he said. What the hell did that mean?
Everything seemed to be going well. The nurses weighed her and said she was 7lbs 3oz. She was 19.5” long. The surgeon was joking with them, so I felt sure everything must be ok. But then I realized the nurse weighing Halle was stalling. She seemed to be looking for something. I asked my husband to find out why we weren’t being allowed to see our little girl. “I want my baby,” I said.
The nurse said she was taking Halle to the NICU for ‘respiratory problems. I told my husband to go with her and not leave her side. I felt sick, my happiness turning to fear inside me. All I wanted was to see Halle, to hold her. After I got my stitches, I waited for the longest hour of my life for my husband to come back. “The doctors say she isn’t normal,” he said. What the hell did that mean? Apparently, Halle’s ears were very low and her head was cone-shaped – as though I’d given birth to her vaginally. I really didn’t care – all I wanted was to see her.
Unless I could regain enough movement in my legs to get into a wheelchair, I was told I’d have to wait 12 hours for the anesthetic to wear off. I was in that chair three hours and 45 minutes later. When I looked at Halle, my first thought was, “She’s so beautiful.” I didn’t care that she looked a little different. She was my baby, and I loved her. How could you not adore that sweet, innocent little face?
Nobody at our hospital had ever heard of Pfeiffer syndrome. It was completely new to them.
When we were told Halle had Pfeiffer syndrome, I panicked and turned straight to Google. I know it’s always a bad idea, but I couldn’t help it. What I found terrified me. I was going to lose Halle, I was convinced of it. The first article that popped up was headed: ‘Prince’s 6-day-old baby dies from Pfeiffer syndrome’. Pfeiffer syndrome is a rare condition, which can developmental delays. Visually, it affects the shape of the head and face as the plates in the skull fuse too early. It can’t expand as the brain grows. Halle had a severe form of craniosynostosis – her head was the shape of a clover. Nobody at our hospital had ever heard of or seen Pfeiffer syndrome. It was completely new to them – the first case in our county. They had to take photos of Halle to send to another, larger hospital to find out what was wrong with her.
It was by far the hardest and scariest time in my life. We’d visit Halle in the NICU every two hours to feed her, but all I wanted was to be able to take my baby girl home. I wanted her to meet her brother and be able to relax and cuddle her.
Halle was in the NICU for eight days – not long when you consider most babies there are preemies. It was so stressful, though. I couldn’t breastfeed her as they wanted to measure how much she ate, so it had to be from a bottle. Because I was in shock, exhausted and not eating, I wasn’t producing much milk either.
After her first day in the NICU, we were told she was being flown to UC Davis Medical Center, in Sacramento. They had specialists there who could help Halle. Of course, I didn’t want to leave her so I asked to be discharged so I could go with her. I was told the soonest I could leave was after 36 hours, so that’s what we planned for. Then, when the time came, they decided not to fly Halle out unless it was a life-or-death situation. This happened twice more. Why couldn’t they make up their minds? Why were they putting us through this? Back and forth all the time – for what?
One night I found a Pfeiffer syndrome support group on Facebook, so I posted a bit about Halle. I’m so thankful I
They decided to schedule surgery as soon as possible. On June 21, 2018, they would remove our baby girl’s skull.
Luckily, Halle didn’t need to be transferred. Instead, she got to come home at eight days old. We were so happy and enjoyed every minute. We wanted to make the most of it because we knew the hospital would be her second home for a while. Her big brother fell completely in love with her as soon as he saw her – it was the cutest thing I have ever seen. A few days later she had her first appointment at Sutter Health. They decided to schedule surgery as soon as possible to relieve the pressure on her brain. On June 21, 2018, they would remove our baby girl’s skull.
For the first month of Halle’s life, I was in shock. Why her? How were we supposed to take care of her? I wasn’t prepared for this. I didn’t feel strong enough. It felt like a bad dream where I couldn’t wake up. As though I was grieving for the child I’d thought I was going to have and never got. I would sit in Halle’s room and cry at what she would have to go through.
Then, I snapped out of it. This was my life now. Halle was the most beautiful girl, and I’d been chosen to take care of her. I can tell you this for sure, she is one of the biggest blessings to come into my life. She is sweet, happy and generally healthy. Yes, she has problems. There are lots of hospital visits, surgeries and procedures. But it’s worth it to have her in our lives.
The guilt and anger hit me after she’d been home a little while. I was angry I hadn’t known about her syndrome. Angry my obstetrician hadn’t done a growth scan. If she had, maybe it would have been discovered. Most of all, I was angry that I hadn’t been able to enjoy my little girl for the first month of her life. If I had only known, things would have been different. It wasn’t Halle’s fault, but I felt like I’d been trying to push her away. Now I realized I’d missed out on time I couldn’t get back. You can’t really understand it until it happens to you.
We made the most of ‘us’ time before Halle’s first surgery. Family came to visit. We went for walks and played at the park. Everyone who saw her, loved her. We didn’t take her out too often because we were worried she might get sick, and that would delay her surgery. She was perfect. She was quiet, slept a lot, and loved cuddles. It was so good to be together as a family.
She was just five weeks old. What if something went wrong?
Because we were enjoying the time, it crushed us when her surgery came around. She was just five weeks old. What if something went wrong? That morning, I got the children dressed and fed, and my husband dropped our son at my parents’ home. They’d visit later, when Halle was out of the operating theater. We packed up the car and drove the 2.5 hours to the hospital.
We checked in quickly and then had to wait – forever, it seemed. Halle had been fasting for six hours ahead of the anesthetic, so she was not happy. She was so hungry, and it killed me not to be able to feed her. Then, after two hours, the nurses struggled to find a vein. They must have tried at least five times – my baby’s screams had me in tears. She didn’t deserve such pain.
And then – we waited again. Our new friends and fellow Pfeiffer family had come to support us, for which we are eternally grateful. The surgery nurse called to say Halle was ok, and they would come and get me when she woke up. When the doctor came out, he said she was doing amazingly well. She wasn’t on oxygen and was breathing on her own, which is a big deal for Pfeiffer babies. He handed me a bag of her hair and explained they had removed her entire skull. It would regenerate on its own in a few months. For now, we should treat it as one giant soft spot and he’d left just enough bone so she could sleep on her back.
I couldn’t wait to see my baby girl and kiss her. The nurse took us to the recovery room and there she was. Our perfect little angel. She was still sleepy from the anesthetic but was doing great. The difference to her head was amazing. My little girl was the strongest person I’d ever met, yet she was just five weeks old. I was so proud to be her momma.
Later, my parents arrived with Sawyer. He ran off to play and shout after giving his sister some kisses – a perfectly normal toddler. I was able to hold Halle again, and she woke up enough to eat and snuggle. She took that surgery like a champ – she was only in hospital for two days, and just like that we were home again.
Her head was very swollen, so she’d need more surgery as soon as possible.
After a few weeks, we took her back for an MRI scan and a checkup. We learned she had hydrocephalus, which is really common with Pfeiffer syndrome. Her head was very swollen, so she’d need more surgery as soon as possible. Two days later, on September 7, they placed her shunt – a device that helps redirect cerebrospinal fluid so the brain’s ventricles can return to a more normal size. It’s made so much difference – Halle is a lot happier now there isn’t all that pain from the pressure in her head. Her next surgery was scheduled for November 2018, a Chiari decompression to remove bone in the back of her head that was causing tissue to extend into her spinal cord. This could have caused neurological damage and delays in speech development, as well as severe sleep apnea. Her surgeon likes to fix problems before they can cause any damage, for which we are grateful, and it went really well. Halle stayed in hospital for just three days before we were able to bring her home.
Since then, she’s come on in leaps and bounds. She’s rolling over like crazy now and can stand up on her own if she’s holding onto something. She’s really close to sitting up unassisted, too.
When I look at Halle, all I see is beauty. Nothing will ever change that.
Her first Christmas was so much fun. It was so special to be able to celebrate as a family of four, and I loved watching Halle laugh with her big brother. He is her favorite person in the world, I think.
When I look at Halle, all I see is beauty. Nothing will ever change that. I love how unique she is. I wouldn’t want to change her. Her differences make her who she is. In my eyes, she is perfect.
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