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Do babies born with dwarfism need to stay in hospital longer?

Do babies born with dwarfism need to stay in hospital longer?

Yes. The length of stay in the NICU depends on the complications that can go along with dwarfism.

Hydrocephalus is the buildup of fluid in the cavities (ventricles) deep within the brain. The excess fluid increases the size of the ventricles and puts pressure on the brain.

Breathing, heart rate, and feeding will all be monitored. X-rays will be done and a specialist will diagnose the baby with a particular type of dwarfism. The baby will receive oxygen and maybe a feeding tube. The parents will be given information on the type of dwarfism their baby has, referrals for support, and hopefully be introduced to Little People of America. (www.lpaonline.org) Many hospitals have reading libraries that the parents or a family member could benefit from. Parents should also receive training in infant CPR. When I had my son, the hospital even trained me to handle the breathing alarm and CPAP machine. I stayed in a room at the hospital where nurses watched for 12 hours overnight to make sure I did everything correctly. I appreciated that.

The hospital also connecting me with clinicians who obtained rental, or free lending of a car bed, (it takes the place of a car seat),  a CPAP for home, and prosthetics for breast feeding, (since his mouth was so tiny).  They were also there to answer questions about breastfeeding.  Later these same clinicians will help with a larger car bed if needed, and how to install a carseat properly. (See below)

They also found information about holding my baby, newborn babies with dwarfism are “floppy babies” meaning their muscles are weak. (Physical therapy in a few months will help with that).  It is super important to support not only their head, but all over because the muscles cannot support the weight of the head yet. Their little bodies will just kind of flop which can damage their brain stem or spinal cord. Even baby carriers or propping them up in infancy is dangerous and can cause orthopedic problems.

I would like to add that many hospitals have a room for mom or family to stay while their child is in NICU, so that mom can breastfeed, and family can stay near.  It may even be needed to transfer to a hospital that has knowledge of care for newborns with dwarfism. However, Little People of America has a medical board with THE BEST doctors who specialize in dwarfism. They can help you and consult with the staff at the hospital. Parents can take a breath and feel that their baby is safe.

 

 

CAR SEATS and CAR BEDS

“Based on recommendations from the National Highway Traffic Safety Administration, the researchers found these mistakes:

  • 86 percent of families positioned the newborn incorrectly in the seat.
  • 77 percent incorrectly installed the seat.
  • More than a third positioned the harness retainer clip too low.
  • 69 percent of babies had a loose harness.
  • Two out of 5seats had an incorrect recline angle.
  • A third used the incorrect harness slot.
  • One in 5families installed a non-regulated seat.
  • 44 percent of seats moved more than 1inch side to side.
  • Half of the seats that used seat belts did not have the seat belt retractor locked.
  • About a third had lower anchors that were too loosely attached.
  • Many used the incorrect seat belt path.
  • Many also incorrectly used lower anchors in the middle seat.
  • 11 percent had twisted straps, which can decrease straps’ effectiveness in restraining a child in a crash.
“A number of studies have shown that an incorrect angle of recline can lead to injury to babies, especially if too upright, as the baby’s head can flop forward and obstruct the airway,” Dr. Hoffman explains, addressing the seemingly less serious errors. “Having a chest clip too low can allow the baby to slump, and there have been cases of strangulation as a result.” And a 1-inch wiggle might not seem like a big deal, but: “If there is more than 1 inch, the seat moves, allowing the crash forces to be transmitted to the baby, not the car or the seat itself, and leads to injury.” –Parenting.com
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Questions Only A Writer Could Ask

Tobias

A few years ago, an author who writes historical fiction contacted me. She was writing a book whose main character was a Little Person with Achondroplasia and his twin brother who also has Achondroplasia.  She asked if I could help her with some research.  I was pretty excited to do it because it gave me a chance to learn the history of dwarfs in the Byzantine era.  The answers given below are for an adult man with Achondroplasia.

“Tyrian purple, the color that denotes Byzantine imperial power is embargoed and under close guard in Byzantium. To steal it is punishable by death.
However a Jewish merchant from Venice has sourced an illegal supply and Tobias, a minstrel, and his twin brother, Tomas, begin a dangerous journey to retrieve the dye and deliver itCCTV into the merchant’s eager hands.
But is this supply as secret as they had hoped?
Trade is cut throat, money is power, men are expendable and death awaits in a city of icons, swords and shadows.
This is Tobias – the story of a minstrel and a broken life…

Semi-finalist in the 2016 M.m. Bennetts Award for Historical Fiction (UK)
Shortlisted for the 2016 Chanticleer Chaucer Awards.
Gold medallion winner with the prestigious Indie B.R.A.G .

‘Authentic characters and a twisting plot move this tale to a gripping end.’ Christian Cameron, author of The Chivalry Series

‘Although the time and the place of the story is very different, there was something … that reminded me of the great Patrick O’Brian. For historical fiction, there is really no greater praise.’ Matthew Harffy – The Bernicia Chronicles.

‘A powerful tale of violence, treachery, and intrigue, set in the cut-throat world of medieval trade.’ Ann Swinfen, author of The Chronicles of Christoval Alvarez.

‘An atmospheric journey through the seedy underbelly of medieval Europe.’ SJA Turney, author of Marius’s Mules.

‘Tobias by Prue Batten is an epic tale of courage, rebellion, helping the right and fighting the wrong. With crisp dialogues and genuine emotions, Batten has created characters that will live for a very long time in your mind…’ Rabia Tanveer for Readers’ Favorite, USA.” — Good Reads

This wonderful, heart stopping book is number three in a series. Each book tells the tale of a different character.  She contacted me all the way from Australia after she found me on Google.  She asked questions of every nature concerning dwarfism and dwarfism in history.  I am sure no one is surprised when I say there is not much information pertaining to people with dwarfism in Constantinople during that time.  But I was up for it.  She knew she could ask me anything and I would answer straightforwardly.  However, I would have to do some serious research.  So I compiled those questions here along with other questions people have asked about the book.  I hope you learn as much from me as I did from this experience.  First, I’d like to plug the book, it is fabulous and a never ending thrill ride.  (And I am not just saying that because she acknowledged me at the beginning and at the end. But I have to say, it was a nice reward for hard work.) Get at Amazon: Tobias by Prue Batten 

Visit Prue Battens site: PrueBatten.com

How were persons with dwarfism viewed in history around that time?

History was not kind to anyone who was different, including people with dwarfism. Achondroplasia is the most common form and is a disproportionate type. That means the arms and legs are shorter in proportion to the torso.  This was something that struck fear into some and curiosity in others.  These people were often forced into slavery as pets or novelties in a royal household. Their lives were not their own, albeit their surroundings were comfortable compared to those who were simply outcast in their community.  Many were abandoned at birth.  If they survived, they may have spent their days lonely and scrounging for food and shelter. Medical care would have been nonexistent, but those who were healthy would have done what Tobias did and seek employment.  We can’t ignore the long held belief in history that Little People were a conduit to the divine. So in many ancient cultures they were revered in a mythological sense. Later in history dwarfism became a medical curiosity. People were often put on display mostly to amuse.

Can LPs ride horses?

My first thought was, how is he gonna get up there?  The majority of  persons with dwarfism in that era were poor and outcast.  So there would be no squire boy to assist him.  If he did get on the horse, let’s say it’s an average size horse, then he may need a custom saddle.  Either way, Tobias is strong willed, so he would find a way.  Physically it is difficult for a person with Achondroplasia to ride a horse due to the fact they are disproportionate, making them top heavy.  The thighs are short making it difficult to stay on a horse.  Medically, there are concerns about the rough ride and its effects on the joints.

In the opening, Tobias is fighting with a man who is not a dwarf, can he run between his legs to get away?

Not likely, unless the man is 10 feet tall or has a terribly wide stance.  She did keep this part in the book. Anything is possible…it is fiction after all.

Could a person who is let’s say 4’6″ wield a sword?

Short answer, yes. Long answer, holding and wielding are two different things.  Swords of that era were quite heavy. They were long swords made of steel and they were pretty tall. The height of a sword would be 50″ minimum, putting the hilt right about chin height.  So in the story, the men had swords that were custom made for them.  Something a blacksmith could do. They also favored daggers and knives.  In the book she describes them as agile and very handy with a weapon.

What type of instruments could he play?

Human beings are very adaptable. those born with dwarfism need to be adaptable to survive. Playing an instrument should be something that anyone can adapt to, so you would think.  The answer is, many instruments would have to be scaled down. Since Tobias is a minstrel, we can gather that his instrument was crafted for him.  He has a “vielle”, which is like a violin or fiddle used during medieval times.

How far could he run and how fast?

Men like Tobias could run very fast if they are good runners, just like average stature people. (He could definitely run faster than me.) However, most LPs could not outrun an average stature runner. The distance is a tricky thing. Little People can get a condition called spinal claudication. It is different that the type average stature people get. In dwarfism, there is less room for their blood vessels near the base of the spine.  So, during a period of physical exertion the blood vessels enlarge and press against the nerves.  This causes numbness and pain in the legs which requires the person to take a break.  So Tobias and his brother would have to rely on strategy to out maneuver their opponents.

What would happen to a dwarf who was taken prisoner for a crime or for war?

Like most slaves, he would be sold.  A person of short stature would be far more valuable at market than even public executions, though I’m sure that happened.

Do Little People get drunk faster than average stature people?

It would be the same as average stature men.  Some can hold their liquor and some cannot.  The alcohol to body ratio would be the same as any person.  A muscular person with dwarfism who weighs 160 pounds could drink more than an average stature man who weighs 160 pounds with little muscle.

Would Tobias and Tomas’ parents have to be short stature?

No.  About 80% of those born with short stature come from average stature parents. Their parents could be or couldn’t be.

Could a short man fight a tall man?

Of course. The fighting style would be different, but for the sticky spots the hero of this story gets himself into, he needs to be able to take care of himself.

At one point in the story Tobias needs to climb over a large rock wall, can he do it?

For this one, I needed some medical journals. I also asked some very nice people from the Dwarf Athletic Association of America, (DAAA).  By now we have it in our minds that Tobias is as rugged as any individual of that period. No cardio needed, that was a tough time in history. So he has the strength, he had the agility, but would his hands and feet work as he needed them to?  Let’s think about it.  Uneven rocks provide small ledges and holes to aid in climbing.  But the hands of a person with Achondroplasia are shaped a bit differently than ours.  Aside from being smaller overall, the fingers are “stubby” and may not be able to grip the rocks as tightly.  That includes any vines that might be hanging.  But rock climbing is something that LPs can do and I have no doubt Tobias can too.  Can he do it swiftly enough to escape?  Well, you will have to read the book to find out.