diaphragmatic hernia in unborn baby

Anyone out there have or had a baby with this birth defect? My daughter is pregnant with her first an sthe baby has a diagphramtic hernis. Her stomach is in the chest cavity. My daugter is also on high aler for pre biirth due to an abnormal amount of amniatic fluid

[nurse12hr]

I found this for you, hope it helps somewhat.



A diaphragmatic hernia is an abnormal opening in the diaphragm that allows part of the abdominal organs to migrate into the chest cavity, occurring before birth.

Causes, incidence, and risk factors    

A diaphragmatic hernia is caused by the improper fusion of structures during fetal development. The abdominal organs such as the stomach, small intestine, spleen, part of the liver, and the kidney appear in the chest cavity. The lung tissue on the affected side is thus not allowed to completely develop. Respiratory distress usually develops shortly after the baby is born because of ineffective movement of the diaphragm and crowding of the lung tissue which causes collapse. The reason why this occurs is not known.

Congenital diaphragmatic hernia is seen in 1/2200 to 1/5000 live births with the vast majority (80 to 90%) occurring on the left side. There is a 2% recurrence rate in first degree relatives of a patient with the disease.

Symptoms    

severe breathing difficulty
bluish coloration of the skin due to lack of oxygen
fast breathing (tachypnea)
asymmetry of the chest wall
fast heart rate (tachycardia)
Signs and tests    

The pregnant mother may have shown signs of polyhydramnios (excessive amounts of amniotic fluid). Fetal ultrasound may show abdominal contents in the chest cavity.

Examination of the infant shows:
chest movements asymmetric with breathing
breath sounds absent on the affected side
bowel sounds heard in the chest
concave abdomen that feels less full on examination by touch (palpation)
A chest X-ray may show abdominal organs in chest cavity.

Treatment    

A diaphragmatic hernia is a surgical emergency. The abdominal organs must be replaced into the abdominal cavity, and the opening in the diaphragm repaired. Support of the respiratory system is necessary immediately after birth until the infant recovers from surgery. Some infants are placed on ECMO (extracorporeal membrane oxygenation) which is a heart/lung bypass machine which gives the lungs a chance to recover and expand after surgery.

If a diaphragmatic hernia is diagnosed early in gestation (~24 to 28 weeks), fetal surgery may be an option to be considered.

Expectations (prognosis)  

Congenital diaphragmatic hernia is a very serious disorder. The lung tissue may be underdeveloped on the affected side, and the outcome depends upon the development of the lung tissue. With advances in neonatal and surgical care, survival is now greater than 80%. A poor prognosis, however, is associated with polyhydramnios, presence of the fetal stomach in the chest, and an early presentation (i.e., distress in the first few hours of life). Infants who survive may have long-term complications including persistent pulmonary hypertension (PPHN), recurrent lung infections, and gastrointestinal problems.

Complications  

pulmonary (lung) infections
other congenital anomalies may be present

[HopeinAl]

my freind had a child with this condition. however they did not notice this on  her ultrsound and to her surprise.. her little girl died 18 hours after her birth. i told her about this post and she said if your DD needed to talk to someone ever about this to email her at ***@****. She 's a very sweet person who has been thru alot and would love to help out in anyway. Hope

[HopeinAl]

dadu..i'll keep your DD in my prayers.. best wishes and i jsut pray right now that God will take of this child and help your family in every way. i'm so sorry...   hope

[dadu]

thanks for the info. and the note from Hope. I already had all the info and much more. Was more intersted in ayone who had or knew someone with the same birth defect. Thanks so much for your replies. It is a very difficult time not knowing the outcome of the baby you are carrying.

[threerosebuds]

Hi -- I'm coming in a bit late so I hope you are still visiting and reading responses.

If you do a google for Kays Kids (dr at SHANDS in Florida), you'll find a website with parents' stories. Many of them offer their contact info, too. That's probably a faster way to get info/contact than going through Cherubs -- I have heard that Cherubs takes forever.

Wishing you well -- update when you can!

[youngm]

Hi at my 20 wk scan they found the same problem with the baby i am carrying(part of the stomach appears to be in the chest cavity) and it was confirmed on my 24 wk scan i feel very uncertain how serious my baby's condition is and i have to wait to see my consultant for another 4 wks which leads me to believe it is not that serious (fingers crossed) i hope your daughter and grandchild are ok. I did speak to my gp who told me not to worry to much it is easily fixed. i have slightly scared myself with the amount of stuff i have read on the internet i am hoping my baby's condition is not that severe.
All the best

[selena k]

My son and his wife are having a baby in Dec. that has been diagnosed with a Diaphragmatic Heart
hernia.  It is a very serious condition and needs to be monitored very closely. The baby is due Christmas Day and my daughter-in-law now goes to the Specialist every week for a MRI.  They have a surgical team already set up to operate on the baby when it is born.  According to the Specialist, the baby has the "lesser severe" of the heart defect, but it is very serious. So far his stomach is moving up into his chest cavity, but his spleen and liver have not moved yet....which is a good thing. His heart has moved to the right side and is on top of his lungs, which will keep his lungs from developing properly.  I'm not sure why your GP told you not to worry too much because it it easily fixed, because it is very serious and not easily fixed. I'm not trying to scare you, but just want to make sure you see a Specialist and have the baby's condition closely monitored.  Hopefully by now you have seen the Specialist and have a better idea of how severe the baby's condition is.  Good luck.  I will add your baby to our prayer list.

[JazMac]

Hi, I am 22years old and was born with a Diaphragmatic Hernia.... There was not anything known about my problem years ago, but now the knowledge and resources are so much better. I am relatively healthy- the hernia re-opened when i was 16years old and i have some breathing problems. I have to go to hospital once a year for a check up.. Every person born with it is different, every person living with it is different- no two cases are ever the same- dont take the doctors knowledge as everything.... The doctors told my parents to go home as i was going to die- they were wrong. Dont worry to much for what you can't change- just learn as much as you can and hope. Hope this has helped. Goodluck to your daughter and grandchild.

[mariluornelas]

Hi, I am 18 weeks and today on my ultrasound my baby boy was diagnosed with diaphragmic hernia. His stomach is in the chest cavity. So far, his breathing and heart look ok but after reading this I am very conserned. i will see the specialist next week , I just need to find out more info on this and on the surgery done to the baby when born. Please I need a hand to hold on to.

Marilu

[KayL19]

hi im 21 weeks pregnant and at my 20 week scan i found out my baby has a congenital diaphragmatic hernia. The stomach and bowels are in the chest cavity, the heart is being pushed to the right and the left lung is being squashed and is not developing properly. I have had a test called an amneocentesis to test for down syndrome and other chromosone abnormalitys. I am so scared and dont know what to do, i am hoping the right lung will develop properly as people can live with one lung if theres nothing else wrong with the baby i think im going to have him and hope the surgery will work. I wish the best to all of you,good luck your not on your own. I am just going to keep praying for the best. Ill let you all know whats happening when i know more. Love kay X

[chelle86]

hi im 19 weeks pregnant and last week i had found out that my baby was diagnosed with the congenital diaphragmatic hernia as well. the doctors have scheduled me to take the amneocentesis, which i am pretty scared of taking because they said there is a chance of miscarage its so scary because i want to do whatever i can to help my baby and make the right decisions but i have no idea what to do.

[fitzie73]

I too had a little girl, Olivia, born with CDH-it is extremely scary going through this when you're pregnant. Your hormones are already all over the place, so this just adds to everything. Doctors now a day's have a better understanding & there is treatment out there for babies born with this defect. When I was pregnant with Olivia, I was monitored every 2 weeks at Mount Sinai hospital, Special Pregnany Program,  in Toronto, Ontario. This hospital is by far the best hospital out there, the dr's there see CDH cases every day. They didn't ask me to have an amnio done, I was just monitored closely by having ultrasounds, bloodwork done, & ton's of fetal echo cardiograms. I'm not sure exactly what having an amnio will do to help the baby....but, I'm not a dr. so I can't really say for sure, I can just tell you what happened with me in my experience.
My daughter is now 5 years old, & is a very healthy, active, smart, NORMAL, beautiful little girl. You will get through this pregnancy...just continue to stay positive, keep good care of yourself both mentally & physically...
DON'T GIVE UP!!!!!!!!

[mycdhife]

Hello and I'm sorry your son has cdh. My daughter was born in 2006 with left cdh. We did extreme measures. We live in Iowa and traveled to Children's Hospital of Philadelphia (16 hours away) for her birth. Yes there is a lot of mis-information about this birth defect. You will find conflicting stories. I will tell you the survival rate is still pretty grim. Half of the babies born die. The reason is...this birth defect, affects so many vital things in a baby. The lungs usually take the biggest hit. The hypertention is severe. They don't know how bad things really are until the baby is born and test can be run.

Stay positive! This is key. Our daughter is a survivor. She turns 4 on the 28th of this month. The doctors are right the babies can be normal. Some are BUT most will have some kind of issues ranging from a little reflux to being trached (on a ventilator) However DON'T let this scare you. They are such wonderful blessings. I have become such a strong person because of my thrid daughter Ava. She has taught me that we must cherish life every second. None of us are assured of tomorrow.

We have a blog http://avaslifewithcdh.blogspot.com and http://cdhawarenessvideos.blogspot.com/

Keep the Faith and Hope Alive!

[omgbecky]

I was pregnant with my first child and was due Feb. 12th 2012. My entire pregnancy was fine, I had an ultra sound every month, did all the extra testing, and on my last doctors visit they said I had too much amniotic fluid and my baby's abdomen was measuring too small and I need a series of test each week depending on the outcome and It was to be done STAT,  I did not take any medication, smoke, or drink, or even have my daily coffee, I gave it all up to have a healthy baby. my water broke that night before any tests could be done, my daughter was born with a diaphragmatic hernia (usually it's the intestines they tell me, but in my case it was my daughters colon on her lung) and I delivered at 35 weeks at a hospital without a NICU, my daughter was transfered to Loma Linda, one of the best childrens hospital in the world and she died when she was two weeks old, I never got to take her home.

So I can tell you this, they tell me 1600 babies are born with this and 800 don't survive, there is a surgery that can be performed, but the baby has to be able to breath a certain amount on their own which my daughter couldn't do, alos because the colon is on the lung, in the x rays they can't see how much lung the child has, they told me in my case, she could have a full lung the colon could just be sitting on it, and it could be fixed during surgery, or after surgery they could find the colon prevented the lung from growing, and they told me even if she did survive a surgery long term life didn't look like an option

I also ironically knew a girl who's son has this 4 years old he lives with tubes, multiple surgeries and can still pass at any time.

Let your daughter know this is so serious, they didn't tell us that and my husband had to wait for approval from his job because we lived far from the hospital and she died before he could get his FMLA approved and missed so much time.

This is a condition that they dont know why it happens or have any real answers, google CDH and also visit change.org and search CDH they need signatures for a petition to congress for a research grant for this very condition