In medical literature, babies with Trisomy 18 are "incompatible with life." Our precious son, Aaron, is defying the odds and not only living, but thriving and loving his life. This is an effort to share his joy in his journey. Like the little purple pansy, he is tiny, but strong and brightens his corner of the world. If you'd like to see more pictures and his story from April 2010 to March 2011, go to Http://www.carepages.com/carepages/GiftfromHeaven
This is by no means exhaustive. It can be used to help others who want to know what can be done for our little ones.
Aaron is a 25 month old male with full Trisomy 18 diagnosed
He was born via C-section at 37 weeks, 2 days due to
persistent heart decelerations with delayed recovery.He was not breathing at birth.Resuscitated via bagging and placed on CPAP
machine as intubation was difficult.He
weighed 2228 grams.Was weaned, with
difficulty to nasal cannula and discharged to home at 16 days with an apnea
monitor.Utah Valley Regional Medical
Center, Provo, Utah.
At 4 weeks he was admitted to Primary Children’s Medical
Center in Salt Lake City, Utah (PCMC) for moderate cardiac impairment.Treated with IV milrinone and lasix and put
on high-flow nasal cannula.Transitioned
back to regular nasal cannula, and to enteral digoxin and lasix and discharged 10 days later with the addition of a
pulse/ox machine.Digoxin was
discontinued at four months and lasix at 7 months.
At 2 months, Aaron weighed 2.9 kg.He had his last central apneic episode (noted
by absence of breathing, bradycardia, and O2 desat) at 2 months, 2
days.He was current on immunizations
and was on ng tube feedings. He was a
known CO2 retainer.
At 5 months, Aaron was admitted for g-tube/Nissan
surgery.Intubation was extremely
difficult and he was diagnosed with severe tracheobronchial malasia.Three days later he had a tracheostomy.Discharged to home after 17 days, on
LTV1150 with vent settings of rate of 30, tidal volume of 50, and a PEEP of
Since his tracheostomy, Aaron has successfully fought off
several upper respiratory infections and two pneumonias.The first, at 7 months, grew out pseudomonas
and resulted in a 6 day PICU stay.Discharged to home with ciprofloxin and increased tidal volume.The second, at 16 months, grew out
pseudomonas, serratia marcesens and stenotrophomonas, also diagnosed reactive
airway.16 day PICU stay and discharged
to home with antibiotics and albuterol (prn).PCMC
Currently, Aaron is 12.1 kg and larger for age than any of
his eight older siblings were.He is
trached/vent dependent and g-tube fed.He can sit with minimal support and is rolling over.He responds well to people, distinguishing
between his family and strangers, and even between his favorite night nurses
and others who know him.He is a happy
child who grasps toys (and tubes!) and brings them to his mouth.He loves to kick a ball around the bottom of
Surgeries, all at PCMC:
tympanostomy tubes, bronchoscopy.Tracheostomy 3 days later.
13 months:cleft lip repair, ABR testing,
hematoma on lip site 10
days later, evacuated and repaired.
16 months: bilateral percutaneous pinning of
talonavicular with lengthening of Achilles
Tracheobronchial malasia, Pulmonary hypertension, Atelectasis, Reactive airway,
Congestive heart failure, moderate
bidirectional VSD, small ASD, tiny PDA, Grade IV vesicoureteral reflux, Severe
bilateral hearing loss, Hypothyroid, Chronic cuteness.