Miri and Leah, our identical twin daughters, were born at 35 weeks on 17/2/97. Miri had a large protruding tongue, but Leah was the most beautiful perfect baby you ever saw. Miri had feeding problems quite early, so couldn't breastfeed and took 1 hour to drink from a bottle. They came home with me after 7 days and were more or less OK until 2 months of age. In hindsight, their breathing had probably been very bad for quite some time. Miri was in hospital for 4 months and Leah for 5 months. 

They have both been diagnosed with Beckwith-Wiedemann syndrome. Their main symptom was macroglossia, i.e., a large tongue. Their tongues blocked their airways which is why they were trached. Due to repeated aspirations, they have each had a fundoplication and gastrostomies. 

The worst thing that has happened occurred to Leah. She would stop breathing at least once a day (after all the operations) when she got upset. She required constant supervision and had to be resuscitated with an ambu whenever she stopped breathing. Eventually, she was moved back up to the ICU, due to pneumonia. Miri was still in the regular ward. The next night, Leah stopped breathing again, however the monitors in the ICU did not go off. No-one knows how long it was until the nurses noticed. She'd already gone into cardiac arrest. She was in a coma for at least a month and on a respirator for 3 1/2 weeks. She now has brain damage due to oxygen deprivation. 

Miri and Leah are now 2 years 8 months old. Miri underwent a tongue reduction at NYUMC in May, 1999, which has been a great success. Recent bronchoscopies have shown that she has developed significant trachemalacia around her stoma, so there's a debate over whether she can be decannulated right now. We are going in for an attempt at surgical decannulation on Nov 7, 1999. We're so excited. Miri is significantly delayed in gross motor and speech. She just started crawling and walks while holding onto someone's hand. She just started saying a few words, but communicates very well with gestures and PCS. She hates her Passy Muir Valve. She vocalizes by covering her trach with her chin. 

Leah has improved since her "accident", although she has severe CP and severe vision impairment. Her hearing seems to be fine, although it's not clear if she understands what we say. She crawls in a circle. She eats 3x day mashed foods by mouth, and receives a top-up at night via g-tube. She still cannot drink by mouth. She has been off oxygen since December 1998. Her developmental age at this stage is about 3-4 months. 

Miri recently started going to a special-ed preschool for kids with moderate development delays. They've offered to take Leah as well even though her delays are much more severe, and we plan to take them up on it. 

Karen & Arie 

Updated 10/20/99