Nissen/esophugus replacement

  1. My 11 yo niece may be in need of reflux surgery, open Nissen -

    Essentially, she drank lye when she was 5 yo (edited for space).

    Two weeks ago, she had a 23 hour test, where there was a record of over 20 (or so) episodes of reflux during that time, one of which lasted for 42 minutes. She is "maxed out" on all possible medications, Nexium, Prevacid, you name it. She was on some other stuff a few years ago, but it was taken off the market,...

    She has been treated by some amazing people at the hospitals, and she is a very intelligent and aware child. She dreams of becoming a Nurse.

    The GI and surgeon indicated she would be at a risk of cancer "by child bearing age" and we have tried many different options prior to even considering the Nissen. At this point, it looks like we MIGHT have to face it, she might need the open Nissen, where the bottom portion of the esophugus will be removed, and the tummy will be teathered to the remainder of her esophugus.

    And, there is also the option of using a portion of her small intestine to act as a replacement organ,should the entire esophugus be beyond repair/hope/medical intervention... I understand that even though this is her own body part, there could still be a chance for rejection. (???)

    We have been advised of a 10 day hospital stay, and the home recovery time to last most of the summer. We understand the surgery is not without risks.

    Does anyone have any information as to life after this type of surgery? We've been told she will not be able to vomit, and belching may be an issue of discomfort. As well, in the event she gets a tummy virus, this will probably be an ER visit to drain anything out of her tummy.

    My sister and Mother are currently speaking with Clinicians and such, seeing if we have any other options open to us at this time. This child has been considered "critically ill for life" however, I'm not sure what that will mean post-operation. As well, her diet is carefully monitored, which we assume shall simply be a part of her life, always.

    We are afraid of the ruptures where the surgical mending slips, and the stomache and esophugus no longer meet. Would we know instantly, due to pain, or is this something that could mask itself, and turn into a full blown infection/toxic situation?

    I have asked my family to seek a counselor who is familiar with the needs of children, especially children after surgery (ie: scars, fears, limitations, emotional trauma, etc...)

    Amazingly, this child has managed to pull through so many times before. I know she will make an excellent, compassionate Nurse, when she is older. (We asked her if she wanted to be a Doctor, she said, "No, I want to help the patients feel better!" We cracked up.)

    Thank you, for reading the vent and answers if you can,...
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    Joined: May '03; Posts: 9
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  3. by   NotReady4PrimeTime
    Let me see if I can offer you some help here. Fundoplication is a fairly common procedure in the population I care for (PICU). Of course we typically see it in conjunction with gastrostomy tube placement for severe symptomatic reflux in children with developmental issues. Your niece would be different in that she isn't having the gastrostomy. It is true that she would have a great deal of difficulty vomiting (but it still is possible... I've seen it!) and belching, because the fundoplication forms a new, tighter lower esophageal sphincter. Pain control in the initial post-op period is important. Morbidity and mortality are both extremely low.

    If they need to rebuild her esophagus, there are some risks involved. Leakage at the anastamosis is seen in a small but significant number of patients. There would certainly be pain and fever (due to the escape of foreign material into the mediastinum) associated with that. It is very unlikely that the entire section would "break free" from the stomach unless unusually high stress is placed on the anstamosis before it has healed. What you refer to as "rejection" is more accurately described as ischemia from inadequate blood supply to the tissues at the anastamosis site. There are many tiny vessels there that need to be connected. This procedure is performed many times a week in hospitals all over the world in children with esophageal atresia, tracheoesophageal fistula, corrosive esophagitis (like your niece's original injury) and Barrett's esophagus (inflammation caused by constant exposure to stomach acids from reflux or prolapse). The mortality rate is quite low, about 5% but the morbidity rate is higher due to the many complications that may arise.

    I wish your niece the best of surgeons and a speedy recovery. With her life experience she will make a fabulous nurse.
  4. by   canoehead
    There is also the option of a partial vrs total fundoplication, where she would be more likely to be able to burp and vomit prn by a few weeks after the surgery.
  5. by   RBNURSENZ
    Am I allowed to give a link here to a mailing list about fundo's?
  6. by   PennyLane
    I'm not sure if this poster is still around. If they are, then I would recommend the website . They have a forum section that I've found helpful.
  7. by   RBNURSENZ
    I haven't heard of that one but will go and have a look. I am a website manager for a site and regional coordinator of a support group supporting families living with gastric reflux, and am always on the look out to stay informed. I wasn't sure if I was allowed to post links here or not - have had my knuckles "virtually rapped" a few times
    If the poster is still around this is an excellent email list where you can ask questions and get responses from parents who have made the decision to proceed with a fundo -
    They helped me make informed choices around my daughters possible surgery and also can let you know the risks, the benefits and the questions to ask first. Fortunately so far we have been able to continue with medical treatment and gain good control of my daughter's reflux at age 3 years.

    Hope it helps

    PS: I don't benefit in any way by posting this link - I am not even a member at this list any longer!