anyone out the with a child with mupltiple birth defects

Nivia - posted on 10/03/2009

when i was first told about some of my sons problems was while still in utero. about 18 to 20 weeks into pregnancy. first they thought he had a condition called trisomy 18 which they were not giving my son any hopes of living through th pregnancy ot immediately after birth. then its was a cleft lip, clubbed feet and small for gestational age. when born is when everything else came to play. heart murmur, bicuspid aortic stenosis, missing left kidney, undescended left testicle, underdeveloped bones in the pelvic area, fused elbows (set at about 90 degrees unable to stretch), cleft lip and pallate, bifid tongue (spell??), small chin, trached and g tube. doctors didnt expect much from my little guy but 4yrs later he is still tackling the world. i thank god everyday for trusting me with his little angel.

Kathy - posted on 09/23/2009

I'm not going to lie and say its always been easy- cause it hasn't.and Frankly there's been times that I questione the phrase: " God only gives you what you can handle." But with every passing year things do get easier- and there's time to breathe, and enjoy and relax.

Michaelann - posted on 09/23/2009

I can definately relate to you. I am a mother of 3, my youngest being my complex kiddo.
we found out prenatally he would have a cleft lip and palate, and atrioventricular septal defect. (2 large holes in the heart) He also has pulmonary valve stenosis. So we thought, piece of cake...all these issues can be surgically repaired.
Not so easy. When he was born, he would desat and turn blue from choking on his own secretions. His tongue would block his airway. He was sent to Childrens hospital, and the specialists came flocking. I will never forget that first day we were there.....they came out of the woodwork!! Cleft team, nephrologists, neurologists, cardiologists, etc.
His diagnosis were: Cleft lip & palate, Pierre Robin, Dandy Walker (brain malformation), Colobomas (clefting of the optic nerve/retina) he required a trach and g-tube. He is missing a left kidney. So much has happened in his 21 months of life. He is developmentally delayed, he has bilateral hearing loss, he had undecended testicles, I dont know I may be leaving some things out, can't think right now.
Things are the "piece of cake" we thought they'd be, but I feel very blessed that we were chosen as his parents. I do look forward to the day his care isnt so critical and I can actually relax and enjoy my sweet little boy!!

Kathy - posted on 09/09/2009

Man- My heart goes out to you. My son was born and immediately rushed to nicu . I didn't hold him till he was about 7 hours old. He had a VSD in his heart. a month later he developed a coarctation of the aorta, and underwent open heart surgery. We nearly lost him. Since then he was diagnosed with static encephalopathy, partial trisomy 16, global dev. delays, autism, GERD and Barretts Esophogus. He (15) just underwent 2 reconstructive surgeries on his feet for severly contracted tendons and ligaments.- We weren't sure at first why he had everything he did, eventually they figured out the genetic thing- it was spontaneous. I know from experience that your heart is heavy, and your mind won't stop wondering why- its a hard road. The answers will come but the most immediate thing is that you were chosen to recieve your son because with out you he would not have survived. God does challenge us- but those of us that are given children with special needs are his most cherished and he's never far- even when it seems like he's abandoned you. Hang in there.