On March 5th, just 17 days shy of her second birthday,
Rhiannon Elizabeth Nisly, who had Down syndrome, passed away from what appeared to be a sudden illness. The autopsy showed that it was not an illness after all, Rhiannon had AAI and she died from a spinal cord injury pertaining to that. Her parents had no clue. She was over a year away from the point where they would even have her checked for AAI (
Atlantoaxial Instability). And it killed her. Just like that.
Rhiannon had been sick with Croup the week prior to her passing, so when she had difficulty breathing, was lethargic and began vomiting the day prior, her parents took her to see the doctor. The doctor felt it was just caused by the coughing and congestion due to the croup/cold. No one realized that the respiratory failure was due to a spinal injury.
The standard medical protocol for children with Down syndrome states that they should get an xray to test for AAI around the age of three. It is required before stating any sports teams or equine therapy. Most surgeons will order this xray prior to any surgery involving intubation, due to the hyper-extending of the neck that is required.
One quick, inexpensive xray can show if your child with Down syndrome is amongst the 30% of children with Down syndrome that have this condition.
Rhiannon was never tested for AAI. She wasn't in the age bracket for it yet. She hadn't needed surgery with intubation. She didn't show signs of a potential problem until it was too late.
Doctors say, "Oh it's so rare. Even if they do have it, it is very unlikely it will cause any issues." According to the link above:
The primary complications result from spinal cord compression.
In most cases, signs and symptoms progress slowly. The diagnosis can be made, therefore, before the advanced stages of the disease.
Death is unusual but may occur in cases of acute decompensation as a result of respiratory arrest related to compression of the high cervical spinal cord.
Several studies have shown that serious complications are indeed rare.
Rhiannon's terrible death may be an unusual result of this condition, but it is a reminder of how important it is to keep looking for complications! Please, please make sure your child with Down syndrome is screened for AAI.
Mommy & Titi
Titi's raisin toes
It is time to “Spread the Word to End the Word,” and on Tuesday, 31 March, events throughout the United States and around the world will make people stop and think about their hurtful and disparaging use of the word “retard.”
Little Miss E is sending an afghan around the world and you can help. Little Miss E's mom is making an afghan to send to families with a child with Down syndrome. A journal will go along with the afghan. When you get the afghan, you take pictures of your child with the afghan and the pictures will be posted on the T21 Traveling Afghan page. After you spend some time with the afghan and write in the journal, you send it on to the next family. Little Miss E will provide you with their name and address via email. The sender will be responsible for shipping costs.
