congenital diaphragmatic hernia - Mothering Forums
 
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#1 of 4 Old 04-11-2005, 06:15 PM - Thread Starter
 
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My 14 YO daughter, Julia, whom I adopted at 6 months old, was born with a left congenital diaphragmatic hernia. She is doing extremely well now, with a minimum of sequalae from having been born with a severe, potentially fatal, birth defect. There were some real tough times in the early months and years of her life, though. I have always been very thankful that she was my fourth child, and not my first, second or even third. My previous experience, raising three babies, the third of which also had special needs, (although not as severe as Julia's), and with breastfeeding adopted babies, was extremely valuable in raising Julia. Without that, I would have been more dependant on the professionals whose opinions tended to be quite a distance from the nurturing kind of parenting that was my natural desire and inclination to do.

I am writing this in case there might be someone else out there who is raising a child who was born with CDH, who would like some support, or just to be friends, with someone who has "been there". Julia is also interested in making contact with other kids who have been born with a CDH. The closest she has come to meeting anyone else, in person, was with her pre-school teacher, who'd had a baby sister with it. Unfortunately, her sister had not survived more than a short time after birth. She felt a special connection with Julia, because of it.

Aloha,
Darillyn
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#2 of 4 Old 04-11-2005, 11:22 PM
 
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Hi and welcome! I don't have any personal experience with this condition, except that a member of my birth club with Abi had a baby with it. It was discovered shortly before birth on an u/s because she just didn't feel right about something. She insisted on the last minute u/s and they found it. The baby was born and placed on immediate life-support machine and was operated on within the day to correct his condition. I lost contact with her a couple of years ago. At that time he was 2, growing well, but tube-fed and not eating. Still, he was a miracle.

I believe there is at least one child on my reflux support board (www.refluxinchildren.com). You might want to post there in the intro section after you register, and someone may be able to help you and even find a friend for your dd.

Darshani

7yo: "Mom,I know which man is on a quarter and which on is on a nickel. They both have ponytails, but one man has a collar and the other man is naked. The naked man was our first president."
 
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#3 of 4 Old 04-12-2005, 09:34 AM - Thread Starter
 
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Hi Darshani! I will check out the link! Julia's condition was diagnosed because the birth mother had a premonition, too. Otherwise, they may have lost her while they were trying to figure out what was wrong. It is pretty sobering to think how few of the kids born with CDH have survived. Julia knows and is thankful, but sometimes wonders why she couldn't have been born without anything wrong. She also has the common complication of severe scoliosis, and had horrendous surgery done at age ten. Still, her spine and rib cage are far from straight, and she has enormous scars, although others don't notice those things nearly as much as she thinks they do. She worries alot about things like finding a prom dress that will fit and cover her scars.

Your baby is just darling!

Aloha,
Noelani
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#4 of 4 Old 04-13-2005, 01:26 PM
 
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Yes, there are 2 kiddos at P2P that have CDH. I know of two others in real life. But they are all really little and most of them have other issues (heart, etc.). Here's the thread for the two kids on P2P: http://www.parent-2-parent.com/forum...ad.php?t=14211

Congrats to you and your daughter for your success and thanks for reaching out!
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