Support Organization for Trisomy 18, 13 and Related Disorders

Madeline Rose Desmond

Location: Hyde Park, MA, USA
DOB: November 15, 2011
DOD: January 3, 2012



Our story[Go To Updates]
Madeline 111511

Madeline was born November 15th at 7:15 pm.  We had known at 21 weeks that she was a girl and had full Trisomy 18.  She tolerated natural labor great and was born alive – our first success!  We soon discovered that she had esophageal atresia and a tracheoesophageal fistula which we elected to have repaired on the 3rd day of her life so that we could feed her and support her breathing without causing her pain.  She had the surgery and did great, but developed pulmonary edema/congestive heart failure at 2 weeks of age.  Due to that and tracheomalacia she remained nasal CPAP dependent her whole life.  We were able to bring her home at 5 weeks of age, but she grew too weak and was having too many spells and we had to say goodbye when she turned 7 weeks old.  She fought to the very end, staying with us until 7:30 pm on the day she turned 7 weeks old.

We miss you Madeline Rose!

Updates [view all]

No updates have been posted.

Donate to Soft

SOFT Auction

View Cart
Trisomy 13
$10.95
Trisomy 13 - A Handbook for Families
by Stenson et al 1992 (copyright 1999)
View Details
Trisomy 18
$10.95
Trisomy 18 - A Handbook for Families
By Stenson et al 1992 (copyright 1999)
View Details
Trisomy 18
$14.95
Care of the Infant and Child with Trisomy 18 or Trisomy 13
By Ann M. Barnes, R.N. and John C. Carey, M.D. 2008
View Details
Trisomy 18
$10.00
Care of the Infant and Child with Trisomy 18 or Trisomy 13 (E-Book)
By Ann M. Barnes, R.N. and John C. Carey, M.D. 2011
View Details

Pay ONLINE by clicking on the
'add to cart' in red!!!




Send checks for the above
purchases to:

SOFT c/o Barb Van Herreweghe
2982 South Union St
Rochester, NY 14624