Our Little Sunshine's CDH Journey

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.

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

CDH

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Copyright © 2009 Hayley Boyd

Wednesday, 9 November 2011

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