The Castle

What a sweet story this is ~

The Castle

He was born at the wrong time to the right woman. 67 years ago Richard
was born with Down Syndrome, his mother was informed moments after his
birth that he was a defective child and should be sent to the 'Castle'.
She decided then and there that no child of her's would grow up in
Lennox Castle, the hospital for disabled children in her area. Doctors,
unnerved at her determination to keep her child, young Richard, informed
her that because he had Down Syndrome he would die young that his
'fourth birthday' would be his last.

She loved that baby.

Loved him.

When his first birthday approached the family began to wonder about the
celebrations. It was decided then and there that Richard's first
birthday would go uncelebrated, there would be no party, no cards, no
gifts. This was not a result of grief, of denial, of shame. Richard's
mom decided that if he didn't have a first birthday - he could never
have a last one. If he didn't turn one, then he wouldn't turn two, if he
didn't turn two he wouldn't turn three, and if he didn't turn three then
he'd not celebrate his last - the fourth. Instead, family celebrations
intensified. Christmas and Easter and all the rest became huge family
celebrations. More than ever before the family pulled together.
Celebrated every life together.

Richard never knew a birthday party.

He never turned one.

His neices and nephews, his great neices and nephews, never even knew
how old their uncle was. Richard was hospitalized only once in his life.
His family filled his room, many stayed with him through the nights,
through the days, caring for him in shifts. Nurses had to constantly ask
people to move and give them room to work. Though very ill, Richard
pulled through ... as if his family had lassooed his soul and pulled it
back from heaven's shore.

It was then that one of the boys took a look at the plastic wristband
the hospital had placed around Richard's wrist to see how old his uncle
was, no one knew. Because he'd never had a first birthday.

Richard died three years ago. Calculations showed that he'd lived for 64
years. He lived loved. He lived part of a family that celebrated
belonging to him. There were "Richard" traditions, at every family
wedding, after the dance between bride and groom, Richard took the floor
with the bride. With every new home or apartment, Richard was the first
overnight guest.

At his funeral, the whole family decided to walk behind the casket. They
wanted not to be in cars hidden from view. They wanted to walk, publicly
proclaiming their membership in Richard's family. This boy who was to be
sent to the castle, lived his life a king. This boy who was to die at 4
had a mother that stole birthdays away and gave celebration to every
day. This boy who was to be hidden died - and 5 generations of his
family walked behind his coffin.

Crying.

***

I am in Falkirk, just about to start a day's long lecture, and my host
Helen, is telling me the story of her husband's uncle Richard. I begged
her to let me write his story here on my blog. She graciously gave me
permission.

Thank you Helen, for a wonderful day with the staff there at Falkirk.
And for the gift of Richard's story.

From: http://davehingsburger.blogspot.com/2007/11/castle.html

How Little Gabriel Survived by Fighting

While this doesn't have much to do with particularly DS, this is an article written by Dr. Mostert (I put another article he wrote about abortion & DS up in October).

This article shows how God is totally in control!

How Little Gabriel Survived by Fighting

by Mark R. Mostert

Recently, the London Daily Mail ran photos of the beautiful seven month old Jones twins. Dressed in similar outfits, (right down to their blue socks) their smiling, curious faces are crowned by shocks or red hair.

Rebecca Jones knew at ten weeks that she was pregnant with twin boys. “When they told us” the Mail reported, she and her husband Mark “were over the moon." As the pregnancy progressed, the happy parents picked out names: Gabriel and Ieuan.

Life was good.

Ten weeks later, however, something wasn’t right. A routine check-up brought news no expectant parents want to hear. Gabriel was only half his brother’s size and his heart was three times larger than normal. The doctors said that such a condition meant that Gabriel would likely die before he was born—a heart attack, or perhaps of a stroke. They also told the parents that should Gabriel make it into the world he would not survive for long.

The news got worse. If Gabriel died in utero, Ieuan’s life was also in jeopardy. The doctors advised “that it would be better to end Gabriel's suffering sooner rather than later.” Rebecca and Mark were being asked to make the unbearable a reality: "We had to decide whether to end his life and let his brother live, or risk them both."

They had some help in making their decision. The Joneses were advised, it seems, that it “would be kinder to let him die in the womb with his brother by his side than to die alone after being born.” This was enough to convince Rebecca: "That made my mind up for me. I wanted the best thing for him."

Everything neatly rationalized, the doctors promptly went work. First, they tried to cut Gabriel’s umbilical cord to end his blood supply. It didn’t work – the umbilical cord was too thick. The doctors then divided the placenta so that when Gabriel died, Ieuan would survive. "I put my hands on my stomach, thinking of Gabriel“ Rebecca said. “It was devastating. I had said my goodbyes."

But Gabriel lived on. The following morning his mother could feel him “kicking madly.” Not only had he survived two deliberate medical attempts to end his life, but over the next few weeks he gained weight and his enlarged heart began to return to its normal size.

Gabriel (1lb 15oz) and Ieuan (3lb 8oz) were born by caesarian section at 31 weeks. Now, the Mail’s photos show Ieuan tipping the scales at 15lb, and the almost disposed of Gabriel at 12lb 6oz.

Gabriel, according to his mother, “is always laughing.” "Doctors tried to break their bond in the womb, but they just proved it couldn't be broken."

At first glance, Gabriel’s story is a heartwarming one. Consider the headline: We're twinseparable! Happy with his brother, the boy who refused to die.

One would reasonably expect a story about the resilience of the human spirit: perhaps an unborn child facing some dire medical emergency with the help of courageous family and skilled physicians; of a roller coaster where doctors never give up trying to keep the child alive, beating back challenge after medical challenge. They use every medical intervention in their considerable arsenal because they believe life is precious and that doing everything possible to save an unborn child is a moral and professional imperative.

In this case, however, such a scenario is a lie.

Increasingly, as in Gabriel’s story, we treat unborn children with serious medical disabilities as threats to their unborn siblings, their families, and even their communities. It’s getting more difficult not to believe that many in medicine think that some entire groups of unborn children with disabilities are expendable. That’s one reason why we dispose of most children with Down Syndrome in-utero. Perhaps, as with Gabriel, killing unborn children with heart defects are next. Why not unborn children with cystic fibrosis, spina bifida, or those genetically likely to have blue eyes? Why not by gender? Why not destroy certain ethnic groups?

What really happened was that Gabriel survived in spite of his parent’s permission for him to die (after some serious prompting by the doctors, no doubt) and in spite of his doctors, who were trying to kill him. Gabriel’s physicians were deliberate and tenacious in wanting him dead: When one method didn’t work, they tried another. When he didn’t die, they marveled at this little boy holding out against their sophisticated plotting. That’s why his doctors nicked named Gabriel “Rocky.”

The underdog, facing incredible odds, willing to give his all, fought back. But that’s where the Ricky analogy ends. Gabriel couldn’t match his adversaries pound for pound, move for move, scalpel for scalpel.

But fight he did, blind to his enemies, unable to anticipate the direction of incoming blows in a lethal dance bereft of rules or referee.

But fight he did, as mightily as his little limbs would allow.

Mark R. Mostert, Ph.D is the director of the Institute for the Study of Disability and Bioethics at Regent University.

http://www.theconservativevoice.com/article/29476.html

One more thing

One more thing I forgot to add in our "Book Update" post was about pictures!

If anyone would be willing to share pictures of their child in our book, that would be very appreciated too. We are looking for pictures to include throughout the book and also on the cover.

What we mix my brother's vitamins in

Someone emailed and asked what it was that we used to mix my brother's vitamins in. I realized I didn't have it anywhere on the site or blog, so thought I'd put up what I wrote to this person:

~~~

We mix my brother's vits in Fruit spread most of the time. Sometimes it's a mix of fruit spread and coconut flavored coconut oil. We use Crofter's Organic Fruit Spread. We typically use Raspberry. The link for Crofter's is www.croftersorganic.com.

Book Update

We are making alot of progress on our book, yet we also have alot to do on it still!

The foreword is being written by Karen Gaffney (who recently swam across lake Tahoe!). The introduction is being written by Dr. Lawrence Leichtman. We've emailed Dr. Mostert (I posted an article he wrote on abortion a couple months back) to ask if he would be wiling to write an article on diagnosis and how doctors need to be informed.

We also have articles from alot of other individuals (including Sujeet Desai's mother) who gave us their permission to use their articles. We are waiting to hear from Pat Winders to see if I can include an article she wrote on PT in DS. I spoke to her on the phone a few weeks ago and she had contacted the editor of the journal that her paper was published in to get permission to let us use her article.

We are still looking for stories of anyone who would be interested in writing their stories - regarding their child's heart defect and the surgery, breastfeeding experience, birth/diagnosis experience, and whatever it may be.

~~ Qadoshyah

Special Needs Feeders

While I was working on the breastfeeding section in our book, I came across the link below that has several different "Special Needs Feeders" for babies that need help with feeding. We had to use the SNS with my brother when he was little. I thought I'd post the link up incase anyone was interested in it.


http://www.medela.com/NewFiles/specialtyfdg.html

Too Many Babies Take Anti-Reflux Drugs

http://children.webmd.com/news/20071105/too-many-babies-take-anti-reflux-drugs

Too Many Babies Take Anti-Reflux Drugs

Study Shows Some Infants Get Treated for GERD Unnecessarily

By Salynn Boyles
WebMD Medical News

Reviewed by Louise Chang, MD

Nov. 5, 2007 -- Too many babies who don't need anti-reflux drugs are being treated with them for normal spitting up and vomiting, new research suggests.

When 44 infants with persistent regurgitation were evaluated for gastroesophageal reflux disease (GERD), only eight met the accepted diagnostic criteria for the condition, even though all but two were already on anti-reflux medications.

Pediatric gastroenterologist Vikram Khoshoo, MD, PhD, says a dramatic increase in referrals for regurgitation issues over the past few years prompted the study, which appears in the November issue of the journal Pediatrics.

"Parents have come to view normal spitting up as a medical condition that requires treatment. But in many cases it is more of a laundry issue than a medical issue," he tells WebMD. "We are replacing Tide and Febreze with Prevacid and Zantac."

Babies and GERD Medication

The prescribing of anti-reflux drugs to infants with presumed GERD has skyrocketed in recent years, with one study showing a sevenfold increase in the use of one class of commonly prescribed acid-reducing medicines used by infants between 1999 and 2004.

This dramatic rise in usage has occurred despite the fact that almost no research has been done on the safety of anti-reflux drugs in children younger than age 1, Eric Hassall, MD, of Vancouver's British Columbia Children's Hospital, tells WebMD.

Hassall says the newer generation of anti-reflux drugs, known as proton pump inhibitors (PPI), has revolutionized the treatment of serious reflux in children, leading to a tenfold drop in surgeries for the condition at his hospital.

But he adds that there is no question that the drugs are prescribed too often for use in babies.

"We know that up to 70% of otherwise completely healthy babies spit up up to four times a day," he says. "As they reach the 7- or 8-month mark this rate drops. And by the time they start walking, less than 5% are still spitting up."

He says parents and pediatricians increasingly label normal vomiting as reflux disease, especially if the baby is also irritable.

Constipation, formula protein allergies, and exposure to cigarette smoke are much more common causes of irritability, as is colic, which generally resolves around age 3 months, he says.

"If you remove these exposures, at least 25% of babies will get better within a few weeks," he says. "They may continue to spit up, but they will be much happier."

He adds that the long-term safety of treating infants with powerful acid-suppressing drugs remains unknown.

While studies have shown the drugs to be generally safe in older children with reflux disease, there is also a suggestion that their long-term use may increase vulnerability to pneumonia and gastric disease.

Reflux Red Flags

Khoshoo says babies who spit up frequently should be evaluated for reflux disease if they are not gaining weight normally, if they have recurrent respiratory symptoms or wheezing, and if they are constantly irritable.

Forceful vomiting is another red flag that should not be ignored.

"If a baby is gaining weight and generally happy, the chances are very good that they have uncomplicated reflux that does not need drug treatment," he says.

When the babies in Khoshoo's study who did not have clinically relevant reflux were taken off anti-reflux drugs, most did not experience an increase in symptoms.

There are things parents can do to minimize normal spitting up. The Children's Digestive Health and Nutrition Foundation has these recommendations:

• Avoid overfeeding. Don't feed the baby again immediately after he spits up. Instead, wait until the next scheduled feeding.
• If a baby is formula fed, thickening the formula with rice cereal may help. But Khoshoo cautions that doing this without reducing formula volume will result in overfeeding, which could make the problem worse. He says a baby normally given 6 ounces of formula during a feeding should be fed 4 ounces of formula thickened with 4 tablespoons of cereal.
• Avoid exposure to cigarette smoke.
• Keep an infant upright for at least 30 minutes after feeding.

Khoshoo also recommends putting babies to sleep on their backs at a 30 to 45 degree angle "to let gravity work for you."

Brain Tour

I thought this Brain Tour was interesting. I found it on the Alzheimer's Association website.

http://www.alz.org/alzheimers_disease_4719.asp

Bit more info. . .

Here's a link that has a bit more info about the research grant at DSRTF ~ http://dsrtf.org/news-103007.htm

KKI DS Clinic Research

I was at Kennedy Krieger Institute's DS clinic site and saw this DS research announcment and thought I'd pass it along, incase someone was interested - http://www.kennedykrieger.org/pdf/programs/ds_flier_07.pdf