Im a mother of two beautiful boys. One heavenly angel and one here on earth. Both my pregnancies were hard. Knowing that you are carrying a baby with a life threatening congenital problem is a mother’s worse nightmare. Having it happen twice is almost too much to bear.
My son Alexander was born on 7th February, 2006 with a rare condition called a congenital diaphragmatic hernia (CDH). He underwent surgery at 10 days old but died on 27th February, 2006 when he was 3 weeks old due to complications arising from his condition.
On 26th March 2007 I gave birth to my second son Dylan. He was born with a congenital heart defect (CHD). He underwent surgery at 10 days old to fix a VSD (hole in the heart) and coarctation of his aorta. He still has a bicuspid aortic valve which may cause him problems in the future but for now he seems healthy and like any other active 7 month old.
This is my life. I’m just a mother trying to make sense of it all.
hi there jenny.
i stumbled across your blog today and had to leave a comment. my son (born 9.11.06) was born with exactly the same CHD as your son Dylan. he actually had a few small VSDs which all closed on their own-it was the coarctation that we knew about before he was born. and he also has one bicuspid valve….they are so similar.
frankie had surgery when he was 4 days old (my birthday) and we were able to bring him home after 2.5 weeks. after he started to feed efficiently from a bottle, i was also able to nurse…(and now still am as he does not want to stop!)
frankie has done so well–we feel very fortunate that his repair went so smoothly. but i still have days that are hard when i imagine what it would have been like to have a completely “normal” pregnancy and delivery and early days with my sweet baby. it is hard also because i have so many friends having babies right around when i did and now again and they are all completely healthy. so it makes me enter into the “why me” zone again.
if you want to “talk” i would love it though because i have only one other “heart” mother whom i talk to here in the states.
let me know by posting your email address.
thanks, caroline
Hi Caroline,
I would love to ‘talk’ and find out more about frankie. My email address is jjk1@iprimus.com.au. Feel free to email me anytime.
Jenny