On May 11, 2011…the world became a more beautiful place. Willow Vae Schreiber was born at 9:59pm, at 7lbs 7oz, 19 in long, and lots of black hair. She completed my family, she completed me. My name is Andrea, and I am lucky mom of Willow. Here is our story…
My pregnancy with Willow was anything but calm. From the very beginning I was a high risk pregnancy due to pre-term labor with my son (who is now 3). I took every precaution to prevent the same complications…from daily injections in my stomach to weekly doctor visits. Every 2 weeks I had an ultrasound and it never failed, the doctors always found something. At 30 weeks, I was put on strict bed rest and followed by a Perinatal specialist for a heart murmur in Willow. At 37 weeks Willow arrived via C-Section due to high fluid and pre-term labor. Immediately following her birth, the doctors and nurses were noticing a “grunt” noise and retractions in her chest and throat. She was taken to the NICU a few different times to check her oxygen levels, and was returned to me with no concerns. Four days later we both were discharged. I was elated to be home. Finally, all was ok, and we could start our lives as a family of 4! A few days after being home, we received a call from the pediatrician. He said that Willow’s newborn screen for Cystic Fibrosis came back abnormal and that we needed to have another screen done. So that night, we packed her up and took her back to the hospital to have blood drawn. Two days later the pediatrician called again. The results still showed abnormalities. A week and a half later, she had a Sweat Test to determine if she indeed had CF. The results were immediate… Negative! Needless to say, we were relieved.
Willow was a very noisy baby. She still had a grunt while eating, and always sounding like a little birdy while breathing. At her 2 week checkup, we were sent to an ENT. He diagnosed her with Laryngomalacia (immature larynx). Her vocal cords are floppy, so when she inhales and exhales, they collapse on themselves. The doctor said around 12 months, she should grow out of it. She will continue to be followed by the ENT every month. She also had slow weight gain, so we continued to do bi-weekly weight checks. By 2 months old, the pediatrician showed concern about her lack of weight gain to the increase in head size. He felt it was growing at a rapid speed. Later that week, we met with a Neurosurgeon. He diagnosed her with Macrocephaly, and for the next 4 months we had monthly ultrasounds of her brain. Each showed dilated ventricles but no change. Finally at 6 months old, Willow had her first MRI. I noticed and shared concern to the pediatrician and neurosurgeon, that Willow didn’t show much interest in activities or toys. She wasn’t sitting, and still didn’t have head control, so we enrolled Willow in the Early Intervention Program through our state. She was evaluated by a Physical and Occupational Therapist, and both were concerned about her eating habits. She had a very poor suck and was constantly throwing her head back and extending her body. She wasn’t my happy little baby anymore either. She always seemed to be uncomfortable. We all thought it was just her severe reflux. We even tried switching formula a few times, and nothing seemed to work. On the same day as Willow’s MRI, she had a swallow study done. It showed that she was silently aspirating thins. She was put on thickener, and would be re-evaluated in 3 months. She also saw a Pulmonologist who diagnosed her with G.E.R.D (severe reflux). We had a very busy first 7 months of her life we were looking forward to a less adventurous New Year! Unfortunately we had no idea what was coming our way.
January 1st 2012, … Willow was admitted to the hospital. She was very uncomfortable and in pain. She was getting so upset, holding her breath, and would turn blue. We took her into the emergency room at St. Louis Children’s Hospital, and she was immediately admitted. The following day, 25 different doctors were rotating in and out of her room and tons of tests were being performed. On January 3, our entire world came to a halt. One the tests she had done was an upper GI. She was diagnosed with Malrotation. Meaning, her intestines and colon were on the wrong side of her belly. The Chief of Pediatric Surgery came in and said he wanted to do surgery the following day. Within 1 hour of finding out that she needed the Malrotation surgery; a team of 5 Neurologists entered her room. They asked my husband and me to sit down. And this is where things get blurry…. I remember grabbing my notepad and trying to write down as much as I could, as fast as I could. I sat there speechless and the doctors explained that Willow had Polymicrogyria, more specifically BFPP. They attempted to show us her MRI from December, but I remember staring at each picture as if I was looking at a foreign object. I do remember one part of the conversation very clearly. They said they had NO indication of what Willow life may be like. They had no idea if she will ever walk, talk, play, or interact, but they do know that she will never function as a normal child. Our hearts broke. All I could do is cry and hold my sweet baby girl. Then, I looked at her as she looked at me and I stopped. I stopped crying and realized she is and always will be mine. She is my beautiful, sweet, perfect little girl and I will everything in my power to prove the doctors wrong. Her surgery the next day went amazing. And we were discharged 6 days later.
After we got home, we were fortunate to find an amazing Neurologist who had other children with her same diagnosis. She had many, many follow ups with many, many doctors! Willow continues Physical Therapy and Occupational Therapy weekly through the state program. She also has Aquatic Therapy and Speech Therapy through a local Pediatric Rehabilitation Hospital weekly. She is eating so well, no more aspiration, and is enjoying new foods. She still doesn’t have complete head control or trunk control but it is improving every day.
And then things decided to take yet another turn! In August, we had a phone consult with Dr. Dobyns at Seattle Children’s Hospital. He diagnosed her with MPPH Syndrome. She still has PMG, but that is more of a secondary concern/diagnosis. Dr. Dobyns said it appeared that Willow brain is out of room in her skull. He suggested a spinal and brain MRI immediately. He also suggests that we have abdominal ultrasounds every 3 months and meet with a Cardiologist as a precaution. MPPH is a newer syndrome so there is still so much unknown. This new diagnosis doesn’t necessarily change much. Her prognosis is still unknown, and therapy is what is best for her. We just now have a few more tests and appointment to follow up with! He will continue to follow her progress and we are hoping to make a trip up to see him next summer.
She is now very interested in toys and developing such an adorable personality. She loves to laugh and LOVES other kids, especially her brother! He can do no wrong. Whenever she is sad, he will run over, give her a kiss and dance, and within seconds she is laughing. It is truly the sweetest thing. And even though she is non-verbal (for now) she is able to “talk” to us through her eyes! She has brought more joy, love, and inspiration to my life and taught me more patience than I ever thought possible. She is simply amazing. Today she is followed by 8 different specialists. We have nothing but hope that she will do amazing things in her life, and teach everybody something new, everyday!
