Battle with Right-Sided Congenital Diaphragmatic Hernia (CDH)

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Sunday, November 21, 2010

CDH Awareness

Information and the History of Congenital Diaphragmatic Hernia (2008 reprint)
Originally posted by CHERUBS in 2008...

History of Congenital Diaphragmatic Hernia-

Diaphragmatic Hernia was first described in 1575 by Pare' in reporting in 2 autopsies of adults who had acquired diaphragmatic hernias by trauma.-

In 1672, the first description of Congenital Diaphragmatic Hernia was reported by Lazarus Riverius during the autopsy of an adult male. Miraculously, this man lived 24 yrs with CDH in the 17th century.

- In 1701, Holt reported the first case of CDH in a child.-

In 1796, Morgagni discussed various types of diaphragmatic hernia, including the anterior CDH that bears his name.

- In 1827, Cooper described the symptoms, pathology and classification of CDH.

- 1834 Laennec was the first to suggest a laparotomy that could be used to withdraw intestine from the chest cavity.

- In 1847, Bowditch presented the first collected series of patients with diaphragmatic hernia in 1847 before the Boston Society for Medical Observation.

- In 1848, Bochdalek, described CDH that occurs posterolateral. This now bears his name.- In 1888, the first recorded attempt of a laparotomy to reduce the hernia was made by Naumann.

- In 1902 the first reported successful operation of an infant born with CDH

- In 1946, Robert Gross reported the first successful repair of a CDH in a baby less than 24 hours old.

- In 1976, ECMO (Extracorporeal Membrane Oxygenation) was first used successfully in the treatment of persistent pulmonary hypertension.

- In 1976, doctors first used lambs to create a CDH, researching for the cause and best treatment of CDH.

- In 1989, Michael Harrison led the team at the UCSF in the first successful open fetal surgery for CDH.

- In 1992, "Gentle Ventilation" of CDH first began at the University of Florida, led by David Kays

- In 1994, the first NIH sponsored clinical trial for fetal surgery was done at UCSF for the open repair of congenital diaphragmatic hernia

- In 1995, The CDH Study Group was formed with medical professionals from the around the world with a vested interest in CDH.

- In 1995, the first international organization for families and medical care providers of children born with Congenital Diaphragmatic Hernia was created. CHERUBS still leads the CDH community in providing support and works with the medical committee to provide information and research options.

- In 1996, first successful fetoscopic temporary tracheal occlusion for CDH was done at UCSF by Harrison and team.

- In 1997, CHERUBS published it's first Congenital Diaphragmatic Hernia Research Survey Results, tallying research data from families.

- In 1997, the first on-line information site for CDH was created by CHERUBS.

- In 2000, First NIH sponsored randomized controlled trial for fetal surgery was done at UCSF

- In 2000, the first international conference for families affected by CDH was held in Orlando.

- In 2007, the Association of Congenital Diaphragmatic Hernia Organizations (ACDHO) was formed.

- Also in 2007, the Official Congenital Diaphragmatic Hernia Awareness Ribbon was created by families of children born with CDH to help raise awareness and research of the birth defect.

- In 2007, the first on-line forum specifically for CDH was created

- In 2008, CHERUBS created the first web site dedicated solely to free access of information for research of CDH.- Stonewall Jackson suffered from an unrepaired Diaphragmatic Hernia. Whether it was Congenital is not known.

- CDH occurs in 1 of every 2500 to 4000 babies, as reported in 2006 by The CDH Study Group. The survival rate is still 50%.- The cause of Congenital Diaphragmatic Hernia is still not known but it has been associated with several genetic anomalies such as Fryns Syndrome, Cornelia deLange System, Trisomy 18, 21 and 22.

- Is has been suggested in some medical journals, but not proven, that thalidomide, quinine, phenmetrazine and nitrofen may cause CDH. A Vitamin A diet deficiency is known to cause CDH is lab rats.

- 20% of CDH pregnancies also are diagnosed with polyhydramnios, an over abundance of amniotic fluid
In CHERUBS Membership:

- CDH has both occurred and not occurred in identical twins.
- We have many set of fraternal twins with one baby with CDH and the other healthy
- 3 families out of 2500 have had 3 children each with CDH. The reoccurring rate of CDH in siblings, without any other birth defects or genetic anomalies is 2%
- Our oldest living survivor of CDH is 62 years old. We have over 100 survivors over 18 yrs old.
- 3 of our members, all male, have had 6 CDH repairs each.
- CDH has been diagnosed inutero as early as 10 weeks for several of our members.
- Many of our adult survivors have gone on to have healthy babies and pregnancies of their own. Only 2 families have both a parent and a child born with CDH.
- Several of our members were diagnosed with CDH after 2 yrs old, with the oldest over 40 yrs old.


July 21, 2010, 3:09 PM, 6lbs 10 oz, Whitney Kaholumehekainani Montgomery, diagnosis: Right-sided CDH with the Liver and Intestines UP. 20% CHANCE to survive.



September 14, 2010, 8lbs 14oz, 8 weeks old. First day home from hospital. happy & humble parents Thomas Keaweiwi & Alicia Renee Montgomery of Whitney Kaholumehekainani Montgomery Right-sided CDH & ECMO Survivor.

1 comment:

  1. Heavenly Father has a plan here on Earth for her, she is for sure a miracle baby and He wants her here with you guys. We are all so blessed to know her and her story, its a huge faith builder. You guys are even more blessed to have her as yours:) I still can't wrap my head around that, only a 20 percent chance of survival. She sure did show those Drs just how strong she was and how much He wanted her here! Xoxoxoxo love you guys!

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