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Thread: "Let the mother choose" - India

  1. #1
    Mom of Shane (1/28/93-9/11/99) LCDH x6 and multiple complications and birth defects.

    Founder and President of CDH International.

    Executive Director of:

    CDH International USA
    CDH International UK
    CDH International Canada
    CDH International Switzerland
    CDH International Netherlands
    CDH International Singapore
    CDH International Hong Kong

    Messages may be answered by CDHi Team.

  2. #2
    Interesting article to read how things are different in other places of the world versus the states.

    I found one point interesting: "Picking up anomalies depends on two things: quality of machines and expertise of the operator. You need high end machines with a good resolution to get a clear picture." I had three ultrasounds done on Ian (two after 19 weeks) and I feel my son's birth defect should have been caught. Plus, I was told I was having a girl and Ian was no girl! I live in a very small western state and my OB office is not up to date. I didn't know better. My 3rd son, after Ian, I traveled 3 hours for all my appointments and scheduled his birthdate, just so I would have the peace of mind that everything was going to be okay. After having received the ultrasounds on my 3rd son, there was night and day difference in technology and what I saw on the screen and what they were looking for compared to my ultrasound with Ian. My OB with Ian had no clue what he was looking at on the screen or the expertise to be even doing ultrasounds, after I experienced my ultrasound on my 3rd son. I have video copies of my scans with Ian, but have never showed another doctor, for I don't want to know if the defect was there and missed, for I still got to bring my baby home. But, the knowledge I would have had before Ian was born would have helped me out a great deal.
    Tracy - mom to Ian, LCDH diagnosed at birth, 4/3/04. Ian was born at 36 weeks, spent 53 1/2 days in NICU, 7 days on ECMO, surgery was on day 5, 29 days on a vent, 23 days was an oscillating vent, 546 days on oxygen. Inguinal right and left hernias and undescended left testicle surgeries were done on day 48. Currently has heart related medical issues and exercise induced asthma, but is one happy, happy boy!! Also mom to Cole - 13, Shane - 9, and Toby - 4. CHERUBS Parent Advisory Board Member and Co-Chair, Volunteer Co-Coordinator, and Wyoming State Representative.
    email: tmeats@cherubs-cdh.org

  3. #3
    Tracy, I had a similar experience with you. Small town doc, old machinery and they say they caught nothing. But his video "disappeared" when we asked for his records after we say on one that the OB wrote "stomach missing" and never sent us for a follow-up U/S and never even told us that. The kid had no left lung and everything in his chest. The OB was an idiot. A few years later I went to my sisters' U/S and they were like sci-fi compared to the outdated ones I had! LOL. I 100% agree it's definitely dependent on the quality of machines and the expertise of the operator.
    Mom of Shane (1/28/93-9/11/99) LCDH x6 and multiple complications and birth defects.

    Founder and President of CDH International.

    Executive Director of:

    CDH International USA
    CDH International UK
    CDH International Canada
    CDH International Switzerland
    CDH International Netherlands
    CDH International Singapore
    CDH International Hong Kong

    Messages may be answered by CDHi Team.

  4. #4
    Sometimes I am angry that Braden's CDH was not detected. Although I'm not sure how I would have handled the remaining four months of pregnancy if I had...
    Mom to Brooke-3/22/04- Braden-3/13/08-RCDH diagnosed at birth- treated at CHOP- CDH repair at 1 day old- home on day 12- Orchiopexy for undescended testicle (4/13/09)- Myringotomy with tubes bilateral (ear tube surgery-7/6/10)
    North Carolina State Co-Rep http://i291.photobucket.com/albums/l...bon-braden.jpg Braden's video http://www.onetruemedia.com/shared?p...edium=text_url

  5. #5
    I brought Baer by to see my OB's this week for the first time and they were weird! They kept asking if he was ok now. It is like they felt guilty . I had my last U/S two weeks before he was born and nothing had herniated. Atleast that is what they told me. I live in a big town and my OB practice has 8 or 10 docs now and 3 offices. I had a tech and several docs see my U/S when they were done. They were looking for something else due to to my previous c-sections (3). I had 1 U/S per month during my pregnancy and nothing was out of place. They took oodles of pics due to due to my age. My hubby is very angry at the one doc who sent me home twice saying I was not in labor even though I was panting and contracting. I just could not dilate. Hence all the c-sections! When I finally did get to the hospital, I was very much in labor with a failure to progress just like with baby #1 and #3 (#2 actually made to her planned section date.) We wondered if the two days of labor caused traumatic hernaition. I have seen that once in an car accident victim who had a DH from the trauma. I think the weakness in the diaphragm had to be there anyway for the herniation to occur. I know they cannot see the diaphragm with a regular u/s because the diaphragm is flat, so unless something is out of place, why look? Either way, I am so glad that we did not know. I could not have handled knowing. God gave me just what I could deal with.
    cdh found at birth. 28 days NICU. Vent 7 days. Repair at 3 days. No ECMO. NG Tube 28 days http://i319.photobucket.com/albums/m...don/0004-1.jpg

  6. #6
    Because I had twins I had an u/s with every visit I had the entire pregnancy except the 3 weeks I was in the hospital I had one every week. I had the same tech and a very high tech machine in the office who never found it. Then I had 3 different techs and a similar machine in the hospital and they never found it. Some of my u/s lasted over an hour for them to do the bio physical and everything and they still didn't find it. I never blamed my doctor I always thought that it was because there were two of them in there so it made it harder. But after delivery my mom saw my doctor in the cafeteria and she came up to my mom and hugged her an apologized. She said after the surgery she went back to the office and went over all of the u/s and she doesn't know how they missed it. I personally am glad that I didn't know because I think the stress would have made a complicated pregnancy even worse. Now if things had turned out differently I may have felt differently.
    LCDH diagnosed at birth- surgery repair at 2 days old- vent 9 days- came home after 25 days in the NICU!

  7. #7
    I know that the reason they found Connor's CDH at 20 weeks was because the stomach and heart were not in the correct places and the u/s tech spotted it. My ob practice was in a large hospital with very advanced machinery though so I think that helped.

    I'm glad that I knew about it ahead of time because it gave me time to prepare for the best and worst.
    Danielle- mom to my twins- 6/29/03- Connor LCDH 108 days in hospital- now a happy- HEALTHY 6 yr. old and Madeline my sweet girl both enjoying 1st grade.

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