It was photo shoot day at the Cozens’ home. The front door opened and 17-month-old Presley Ann gazed around to see who had come to visit. Having the look of a department store baby doll, one would never guess what she and her family had endured just a few short months prior. The next hour and a half was filled with warmth, hospitality, and lots of play. Presley Ann and her parents, Tasha and Andrew Cozens, were great sports. At the end of the shoot, Presley Ann gracefully and purposefully walked to her room and proceeded to take a nap.

Tasha and Andrew thoroughly enjoy keeping up with Presley. They recently shared with Little Rock Special Family Presley’s plight with Craniosynostosis:

Little Rock Family: How did you and Andrew feel about the thought of becoming new parents?

Tasha Cozens: We were ecstatic! We come from multiple kid families and have always wanted kids. The day we found out I went into preparing mode! Nine months of planning, cleaning, reading, and of course shopping. What we did the most was pray. We prayed for Presley to be healthy.

I remember the ultrasound at 20 weeks to find out she was a girl like it was yesterday. Everything looked great physically and on paper.

LRF: Were there signs of anything wrong at Presley’s birth?

TC: She was perfect. I know every parent feels that his or her child is perfect, but I really thought she was just that, perfect! My mom jokes that Presley was too perfect, and to just wait until baby number two. She loved people and being out in public. She slept through the night from a very early age and didn’t give us any grief at all! Every appointment was the same, “she is doing great.”

LRF: How did you find out she had Craniosynostosis?

TC: Presley had a rash on her belly for a few days. It was eczema. She had it before, so we were treating it at home. We went to school one morning. Her teacher was absent so an unfamiliar employee was tending to the baby room. They noticed the rash and following protocol, called the nurse in. Because we didn’t have a doctor’s note for this particular rash, I had to take her and get one. Our pediatrician was unable to see her so they said they would get us in with another.

The doctor walked in and immediately went to Presley’s head. He was feeling this ridge on the top of her head and where her soft spot was supposed to be. I am going to stop our story right there. Although I said she was perfect, she did have a ridge running vertically on her scalp and never had a soft spot. This pediatrician, whom we had never seen before immediately saw my daughter and asked if anyone had ever “talked to me about her skull.” I was stunned and wasn’t sure if he had read the chart to see that we were in for a rash on her stomach. He continued to feel her head. He left the room for a brief moment, came back and said, “I think Presley has Craniosynostosis.” I had no clue what that was. I assumed it was serious. This doctor (who is now our current pediatrician) told me he wasn’t sure, but Presley needed x-rays to be positive. I remember just shaking my head as he told us to go down to the first floor for x-rays right then. As he was leaving he said, “Oh, and that rash is just some eczema.”

The doctor called that afternoon to confirm that she did have Craniosynostosis. He said that we would be getting a call from a neurosurgeon at Arkansas Children’s Hospital to make a plan. I remember sitting in my kitchen floor crying, completely devastated. Presley actually crawled to me and smiled.

It was the holiday season. We tried to keep everything as normal as possible, but our appointment was not until January 2. That kept looming in the back of our minds.

We had to do the cranio vault reconstruction surgery. We were told that without this surgery, which would take about a 3-inch by 1-inch chunk of her skull out, the chances of delayed development, brain damage, vision problems, physical abnormalities and the list goes on, would be nearly 100 percent. We knew it had to be done. After the surgery, the doctors met us in the waiting room to tell us that everything went perfectly. A huge weight had been lifted. All we wanted to do was to see her and love on her as much as they would allow!

LRF: What exactly is Craniosynostosis?

TC: Craniosynostosis is when a child’s skull sutures fuse together prematurely. One in 2,000 children have this with no link to a specific gender. There are three main categories; sagittal, metopic and coronal. All types deal with where the sutures have closed on the brain. Presley had sagittal, the most common type. If caught early, one will have the best prognosis. We were told that Presley’s vertical sagittal sutures were closed before she was even born.

LRF: How did Presley’s diagnosis impact you and your family?

TC: I think that our faith was shaken a little, but in the end we were more thankful for God’s blessings than ever before.

Presley is the first grandchild on my side of the family. She was the first girl in 36 years on Andrew’s side of the family and second grandchild. It was really hard to explain to our family what was going to happen, and what potentially could happen.

I know for a fact that without the outpouring of love, we would have not been able to endure what we did.

LRF: What does this diagnosis entail as far as treatments, prognoses and ongoing care?

TC: Each type and severity is different. We were obviously blindsided by Presley’s diagnosis. We are very lucky that it was caught and that she was able to have the surgery performed before one year. The whole surgery process took about 4-5 hours. Most CVR surgeries require a blood transfusion. Presley did not require a blood transfusion until immediately following the surgery when she was in the PICU. We had several post-op appointments with her plastic surgeon to assure that the healing was going well. About a month after her surgery she had to have helmet therapy. She wore a molding helmet for about 60 days to shape her head back to normal. We chose a light pink helmet and decked it out with velcroed bows so she still looked her stylish self!

LRF: What are some ways you’ve reached out to others in this situation?

TC: Within minutes of me announcing Presley’s situation on social media, about a dozen friends from many different walks of my life gave me the name of a lady whose daughter was just a little younger than Presley. Her daughter was diagnosed with coronal craniosynostosis. We traveled this journey together. It was so wonderful to share all the emotions that we both had. Talking it out with someone in the exact same situation made me feel normal. She was there the day that Presley had her surgery, and I was there the day her daughter had hers.

I am in a group called Cranio Care Bears on Facebook. It is a non-profit support group started by two moms that also have cranio kids. They send care packages to children that will go through the surgery. They post daily about the children that will have surgery the next day, just to have some extra prayers from people who know how that day feels. They have Q&A posts daily. Several questions I have had are usually posted before I get the chance to ask! Cranio Care Bears set out a challenge to get PJs from all 50 states. PJs are one of the more needed items they provide in their care packages. My family, along with some wonderful co-workers have collected over 30 pairs of PJs to send in honor of Presley.

Something I have wanted to do since Presley’s diagnosis is to start an annual 5K. I have taken baby steps to get it going and hope to have one up and “running” within the next year or so.

LRF: What advice would you share with families who may be faced with difficult circumstances?

TC: Educate yourself. Seek out a helpful support group outside your immediate friends and family. Friends and family are the best support, but everyone could use an outsider’s perspective. Accept help! Do not be afraid to be vulnerable. Do what you have to do to be in a solid emotional state for your child. Take the time to appreciate the small things and never take any second for granted.

Check out Tasha’s blog at KeepingUpWithTheCozens.Blogspot.com and CranioCareBears.org.