Our Little Sunshine's CDH Journey: 4d Scan is BOOKED yay

CDH

Congenital Diaphragmatic Hernia (CDH) is a birth defect that occurs when the diaphragm does not fully form, allowing organs to enter the chest cavity preventing lung growth. CDH strikes 1 in every 2500 babies. The cause is not known.

Every CDH baby is different, there is no way to predict the outcome of any patient. Some babies with no diaphragm and little lung growth have survived, while some babies with full lungs do not. These children are very different, requiring different treatments, and varying amounts of medical support.

50% of babies born with CDH do not survive and sometimes the remaining 50% have to overcome very difficult medical complications. Many CDH babies have minor lasting health problems such as feeding aversions, asthma, scoliosis, or short-term oxygen dependency. A small number have major lasting health problems such as ventilator dependency, brain damage, or hearing problems. Many patients have no long-lasting medical problems at all other than a scar from the CDH repair. CDH can occur alone or with other birth defects, and rarely, it occurs as part of a syndrome.

Friday 7 August 2009

4d Scan is BOOKED yay

we decided to go ahead with a 4d scan, as it will be something of Sunshine we will always have, specially as we don't know how this will all turn out, booked an expensive package £199 but get lots included in it and will be well worth it, paid the deposit just have to pay the rest when we go on the.....27th August at 18.20, i can't wait :)

3 comments:

Hope for congenital diaphragmatic hernia said...: Hello and welcome to the cdh world. Sorry that you have to experience this difficult road. My daughter was born in 2006 with severe left cdh. She survived but two years later reherniated. She has been having trouble ever since. She has a feeding tube and has been off and now back on central line (IV) feeding. These kids are so tough and are FIGHTERS! Keep the faith. Hang in there. If you want to chat email anytime. mycdhlife@gmail.com; 7 August 2009 at 20:18
Hope for congenital diaphragmatic hernia said...: I forgot to leave our blog...incase you want to read Ava's story.

http://avaslifewithcdh.blogspot.com; 7 August 2009 at 20:19
Ricky said...: Money well spent. I just wish we had the chance to do the same with Nathan.

Looking forward to it.; 7 August 2009 at 22:17

Journey So Far (since diagnosis)

17+3 weeks: Congenital Diaphragmatic Hernia found

18 weeks: CDH confirmed, stomach and part bowels up

24+1: MRI, still stomach and bowels up, liver down

26+1: still stomach and bowels up, LHR=1.3 - 1.5, no visible left lung

28+2: 4d scan, EFW=3lb

30+1: still stomach and bowels up, liver down, LHR=(greater than) 2

34+2: 1st steroids

34+3: 2nd steroids and MRI (get results in 2 weeks) high fluid levels, EFW=5lb 3oz

36+2: still stomach and bowels up, liver down, LHR= 2.2, EFW 6lb 12oz, higher than normal range fluid levels

37+2: final visit to fetal medicine, Fluid levels looking better, EFW 7lb 1oz