TrachKids.org

TrachKid Profile

The Amazing Ambrose was born January 19, 2008. He was born 6 1/2 weeks early, weighing 4 lbs. 1 oz. He had a rough start, spending 2 1/2 months in the Intensive Care Nursery. After more than a dozen episodes during which he stopped breathing, turned nearly black and needed several minutes of bagging to recussitate him, he wound up getting a trach. He had upper airway obstruction involving laryngomalacia and possibly other factors as well. His severe reflux led to a Nissen fundoplication and G-tube. He experienced transfusions, hyponatremia, seizure onset, bilateral hernia repair.

He has now been home for several months and apart from the ongoing oxygen requirement and seizures he has been doing well and staying out of the hospital. Hurray for Ambrose!

Ambrose and his big sister, Sophia now residing in Heaven, share the unfortunate distinction of being the only cases ever reported in the US of a terrible syndrome called Taybi-Linder. Please see her profile in the Memorials section under Sophia Carole Brown.

Ambrose is a strong and determined boy. He has amazed his doctors by beginning to crawl "combat style." Hopefully it is just the beginning of many abilities he will achieve. We are so proud of him, whatever his abilities may be.

Stay tuned as he writes his own story.

December 23, 2010
Ambrose is less than one month from his third birthday. This is quite a milestone as most children with Taybi-Linder syndrome die within the first year of life. He has had a number of respiratory illnesses, some requiring hospitalizations. He is now on CPAP and Pressure Support at night and the trach collar during the day. His greatest challenge has been his unusual anatomy. He has had many episodes of respiratory distress caused by the trach tube not sitting properly in his trachea. (Which took a while to figure out.) He has had a series of custom trachs made and seem to have finally found just the right one. It is a Bivona TTS with custom 90 degree angle. It is quite expensive (just over $800 each) so we are only permitted one per month and must wash and reuse them.

January 19, 2012
Ambrose has just turned 4! This is a HUGE milestone. Most children with his diagnosis don't reach their first birthday. His darling sister died 19 days before her 4th birthday. Ambrose is still going strong! He is such a wonderful boy who touches everyone's life who meets him!

Here are two poems by Ambrose's Daddy:

Father's Joy

I hold in my hands
A fabulous creation
In no other land
Exists such sensation.

Not minding a clock
So early he came
Chip off the old block
Ambrose Brown is his name.

He stumped all the chumps
Defied experts with pride
He took lots of lumps
And took them in stride.

Now home we all bond
He eats, poops, and grows
His Mommy is fond
Of his cute button nose.

--James C. Brown

My Daughter My Son

A hardscrabble road
Lay before her in life
Her pure days consumed
With struggle and strife

Yet she forged her own way
Amassed loyal fans
She promised to stay
Off'ring forth both her hands

But God had a plan
For Sophia my sweet
In Hea'vn reserved her
A throne for a seat

Only four years of age
I was smitten by her charms
I Lost My Whole World
When she died in my arms

A year bore the scar
From whence my arms she was torn
Till the heralded day
When Ambrose was born

With much the same bias
His fortunes the same
Big sister parting waters
Stacking odds for his game

With luck, faith and courage
His soul shall endure
Guardian Angel Sophia
Stands sentinel at his door.

• Gender: Male
• Demographic Region: North America
• Siblings: One
• Medical Conditions: Laryngomalacia, Seizure disorder, G-Tube, Microcephaly, Skeletal Dysplasia, Taybi-Linder Syndrome, hyponatremia, cardiac anomalies, scoleosis, visual & hearing impairment

History

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Member for

3 years 25 weeks

Location

Country

United States

State/Province

Vermont