Aaron is a 25 month old male with full Trisomy 18 diagnosed prenatally.
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 10. PCMC.
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 his crib.
Surgeries, all at PCMC:
4 months: g-tube/Nissan, tympanostomy tubes, bronchoscopy. Tracheostomy 3 days later.
13 months: cleft lip repair, ABR testing, bronchoscopy, circumcision. Developed hematoma on lip site 10 days later, evacuated and repaired.
16 months: bilateral percutaneous pinning of talonavicular with lengthening of Achilles
Trisomy 18, 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.
|Current: 25 months|
So sweet! And encouraging for the dad of a full T18 daughter, almost 6 months old!! Thanks for sharing your story! I'll be passing it on to family and friends.ReplyDelete
I'm so glad it give you hope! Our babies are the sweetest blessings. Keep me posted on how she does.Delete
my daugther was just born (1 month) and as full T18. She has Pulmonary hypertension and heart problems and im traing to understand this sindrome a litle better. Doctors dont want to operate to her heart because of her pulmonary condition. Does Aaron where oxigen because of the hypertension? can you help me untherstand a litle better what it is? Here in Portugal they dont know much.
thank you so much.
My email is firstname.lastname@example.org
We have just had a diagnoses of T18 and are expecting a little boy is March 2016, our 4th blessing. He has a lot of issues and are meeting the neo natal team this week and a fetal cardiologist the week after. It is good to read encouraging news about your little boy. We are in the UK.ReplyDelete
God bless your sweet boy Aaron and you for loving him and caring for him.ReplyDelete