Care & understanding for babies with CDH, Congenital Diaphragmatic Hernia (橫隔膜缺損)

waiwaiber

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Care & understanding for babies with CDH, Congenital Diaphragmatic Hernia (橫隔膜缺損)

From the words - congenital diaphragmatic hernia, it can tell breifly about this kind of disorder - a hole, in the diaphragm, of the fetus. It is an illness found in babies which can usually be detected during the detailed ultrasound performed on the mummies-to-be.

In simple words, CDH refers to a situation where a hole is developed in the diaphragm of the fetus 'causing' the intestines (and sometimes the liver as well as the stomach) to grow in the lung cavity instead of the abdomen (or places where they should be), so much so that normal lung tissues are not given any spaces to grow.

It is a severe congenital illness which could develop on the right or left or both sides of the fetus' diaphragm, any of which would require 2 things:

1- parents would need to decide whether to continue or terminate the pregnancy; &

2- if continue with the pregnancy, the baby would need to have an operation once he or she is born for repairing the hole of the diaphragm.

The reason for this kind of illness is unknown but every 2500 to 3000 babies will have 1 sufferer. The fetus would not have any immediate danger as it is not at all relying on its lungs for survivial while in mummy's tummy. However, it is life-threatening to the baby after birth as they will have difficulty in breathing due to hypoplastic lungs.

This kind of illness may associate with some other severe congenital illness, e.g. heart disease, any usually the "aminio" test will be performed on the mummies-to-be who are also referred to other paediatric doctors and public hospitals for delivery.

I do not have any medical background. I had never heard of this illness until last August when my son was born.

Will talk more next time, if this would be of any interest to you.
 
Care & understanding for babies with CDH, Congenital Diaphragmatic Hernia (橫隔膜缺損)

Thankyou my friends for viewing this thread during the past few weeks.

In fact, TVB has once had a special programme last year concerning this congenital disorder -Tuesday Report -- 'the choice of life and death' /「星期二檔案」--「生命的抉擇」, a programme which makes every tears drop.

http://mytv.tvb.com/news/tuesdayreport/2273/3377
(CTL+click to follow link)

Do leave a comment. Will talk more next time.
 
waiwaiber

I'm sure you went through a tough time during pregancy and when your son was born. I read from the other thread that your baby was born 2 mths premature. Does this has anything to do with CDH?

My baby was born 10 weeks premature but for different reason. He was seriously under-developed due to maldevelopment of placenta and lack of nutrition flowing to the fetus and therefore need to be born premature.
 
thx so much for your sharing, jormankiu.

CDH is a congenital illness which developed when the fetus is around 8 to 10 weeks. It can be detected under detailed ultrasound of the baby performed around 21 to 23 weeks of preganancy. However, given that there are still limitations in ultrasound technology, there would usually be a number of possibilities of illnesses and 'diagnosis' would only be confirmed when an MRI is performed on the baby during the 30+ weeks of pregnancy.

Many babies with CDH can get to full term which is very much an adventage for the babies as they would need to have an operation immediately after they are born. My baby was born premature due to natural contraction of the womb.

Preganancy is never an easy path and it requires extraordinary courage to continue a problematic preganancy and much more after the baby is born. Your belief and the daily care of the baby WILL make a difference.

I hope your baby is fine and if you don't mind, pls share your story and tips for taking care of a pre mature baby in my other thread under "Feeding Baby". Thx
 
Dear friends,

This is a link in youtube which sort of 'summarises' the illness and our feelings as parents of a CDH baby: [ame]http://hk.youtube.com/watch?v=c7Iq4d8Ycvs[/ame] (CTL+click to follow link). This is the least sentimental video and the words there mean a lot to me.

Wish to share this with you.
 
Thanks for sharing all this information about your baby's condition. You must be going through a tough time. No one understands what it's like to have a child who is not healthy unless they too have children who are sick. I think you are very brave. My 2nd son was born at 30 weeks with hypertonia - it's not a condition rather a symptom of many possible diseases where the joints, limbs, muscle tone is over active and very tight. to this day we do not know why he was born like that or if he will be ok when he's older. it's a wait and see if he walks, talks, develops normally and it has been a long road and struggle for our family. You can read our story here:

http://blog.milkmonsterlaughs.com/2008/10/in-dark-hole.html
 
Dear Milkmonster,

I browsed your blog which contains a lot of different information. I share every words you said. I guess I am not any extrordinarily brave to ve continued with the pregnancy. I just could not be so cruel esp when bb is already kicking so hard in my tummy. I guess as long as one remain hopeful and thankful, the good things will come back themselves.

Perhaps it is not so much a blessing that our babies got some kind of disorder, but now & then, i truely feel my family so blessed & fortunate everyday to ve a special bb and so much appreciate the big window that God has opened to us when he closed the door.

My baby's story was on yesterday's Chinese radio programme (14:00 to 14:30 slot) with Dr. Yeung Chung Kwong, professor in surgey & urology in CU, explaining the illness & answering queries. You may click:


http://www.rthk.org.hk/rthk/radio1/adwiser/20090330.html



2009-03-30
收聽 網上直播完畢稍後提供節目重溫
 
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