My Medical Story: Danika K.
Danika - bubbly, happy, silly Danika. She's 22 months old and has had quite the road with medical ups and downs. But she's managed to keep that big inspiring smile of hers. She also has quite the story to tell that everyone should read to educate themselves on the importance of seeking professional care!
Danika was born with Achondroplasia, which is the most common form of dwarfism. We didn't learn of her diagnosis until she was 4 hours old. I was scared and overwhelmed at first. When I say that, I mean I was scared of medical issues, and scared of what the future held as far as her health. I quickly reached out and looked for other families and forms of support, which I strongly suggest to anyone.
Immediately I found a genetics doctor and neurologist when Danika was 2 weeks old. She was having long pauses in her breathing, clonus (foot spasms), projectile vomiting, uncontrollable eye movements and many other neurological problems. That's when we did an MRI and sleep study at 5 weeks old. We woke up the next morning from the sleep study to head home. It's an hour drive and before I could get home my phone was ringing, and it was the hospital. Danika's foramen magnum, base of her skull, was very tight and narrow. This was the reason for all those issues, it was pressing on her spinal cord. They wanted to do decompression surgery right then. I asked them to wait as I wanted to contact A.I. DuPont on what their thoughts were. DuPont Hospital has wonderful specialist that specializes in forms of skeletal dysplasia. So after a couple of days we heard from DuPont, and they informed me she did indeed need the surgery but wasn't stable enough to travel from North Carolina to Delaware. So at 6 weeks old Danika had her first decompression surgery. We were "told" she would be decompressed from her skull down to C2 on the vertebral column. Keep reading for why I said it like that.
After months of struggling with feeding issues and not gaining weight it landed her having to get the nasal gastric tube (NG tube). Then she discovered it like any 8 month old would and started pulling it out. So we decided to go ahead and have a G tube placed, which goes straight to her stomach. I was starting to get really concerned because at 8 months old she still hadn't gained any head control. It's common with Achondroplasia that it takes a little bit longer to gain head control due to the larger heads. I put it off that due to the surgery and the larger head, she was just set back. By 10 months old I was really worried so we set off to see the doctors at DuPont Hospital. There, they did another MRI and got the results that day. My heart broke into a million pieces. The doctor that did her decompression surgery didn't go down to just C2, he went down to C4! He went too far down. He went too far down and this was why she couldn't even remotely hold her head up at 10 months old. Can we fix this? What is the damage? Is she going to ever be able to hold her head up? Those were a few of my questions.
Well we left with a neck brace/collar. We all were hopeful that catching it then we could correct this problem with the neck brace. She was to wear this neck brace all day every day in hopes of correcting the fact that her neck was unstable and that it would hopefully grow in the right direction, which is up! After months of wearing the neck brace and numerous x-rays over a span of 7 months to watch the progress of how her spine was growing, we learned what we'd feared. The brace wasn't helping.
Danika's spine was collapsing. So instead of Danika's spine growing up, it was growing at a curve, towards her spinal cord. As you know your spinal cord controls everything - breathing, heart rate, everything in order to function, in order to live.
Because the first doctor performed her surgery incorrectly, it left her skull to do a balancing act on her spinal column that wasn't strong enough to hold it anymore. Her 2nd vertebrae (C2) started curving in towards her spinal cord and it had to be corrected or we'd face spinal damage or losing her.
This news came just 2 days before Christmas 2013. But I was determined to enjoy Christmas and we'd tackle this after. So Christmas passed and the phone calls with DuPont Hospital started. The plan of action was pins and rods that attached from the base of her skull to C6 on her spine along with a medical halo used to hold her neck and head in place for proper healing.
February 3rd, 2014, Danika had her 2nd spinal and decompression surgery. They placed the rods and pins along with the halo. Let me remind you she's only 20 months old. But after all she's been through she's managed to always keep that fabulous smile of hers. It was a rough road after the surgery, she started having seizures which hopefully was just due to such a traumatic surgery. She's now halo free but still has a long road to recovery. But just like everything else she will get through this wearing a smile!
I honestly couldn't stress the importance of seeing a doctor that has experience with kids with dwarfism or any other special needs. If a doctor tells you, “Oh, I've seen a few here and there,” your best bet is to seek someone who has seen quite a few, that is a Specialist!!! It is extremely important that you get the best possible care for your child with any form of skeletal dysplasia. Although at the time, the best we could do for Danika’s first surgery was to have it here at our local hospital in North Carolina. So please take our very negative experience and learn from it. Seek professional experience! Don't be afraid to reach out to other families or ask questions. That includes doctors. Nothing should be off limits when it comes to your children. This new "family" has been a huge blessing to us. We are blessed that Danika's never let any of this stop her and I will make sure no matter how small she will always reach for the stars!