Getting the Call
When an organ becomes available and is suitable for your child, you will receive a phone call. Timing is very important and your coordinator will tell you when you need to arrive at The Cleveland Clinic. After arriving to the hospital, your child will be admitted and preoperative testing will consist of a Chest X-ray, EKG and comprehensive labwork. When appropriate, your child will be transported to the operating room. Your family will be directed by the ancillary staff to a waiting area and periodic updates will be provided while you wait for your child’s surgery to be completed.
Surgery – What to Expect in the Operating Room
During the transplant surgery, your child will be placed under general anesthesia which means he/she will be given medications to put them to sleep. Your child will also be placed on a machine to help them breathe (ventilator). An anesthesiologist will talk with you and your child in more detail about this process prior to surgery. The transplant surgeon will make an incision in your child’s abdomen. The incision size varies according to the original disease, the patient’s body conformation and pre-existing scars. Through this incision, your child’s intestine will be removed (together with other organs if a multivisceral transplant is performed) and the appropriate donated organ(s) will be placed into your child’s abdomen.
During the surgery, your child may require a surgical technique called veno-veno bypass. If required, your child’s surgeon will place an incision in your child’s underarm or neck and groin for the placement of catheters. These catheters are connected to a machine allowing the blood to bypass part of the upper abdomen during surgery. The transplant surgeons will decide if this machine will be used based upon your child’s condition.
Special mechanical boots will be used to keep blood flowing through your child’s legs to try to prevent dangerous blood clots. Your child will be in the operating room approximately six (6) to twelve (12) hours (the operation may last longer without necessarily meaning that something is going wrong). As your child recovers after transplant and begins to ambulate, these boots will become unnecessary.
Drains will be placed into your child’s body to allow fluids to be removed and to assess the healing process. Every transplant candidate who has a functional rectum will be given the consideration of being reconnected. This opportunity will allow normal bowel movements to occur from the anus. There are certain situations where this is not possible. Your child’s surgeon will discuss with you all the possible options before the transplant surgery occurs. Please consider that unexpected intra-operative findings may determine a change in the original plan (which remains true for every step of the transplant procedure).
Everyone undergoing intestinal transplant will have a stoma at the end of the procedure. A stoma is a surgically-created opening in the small bowel or colon (respectively ileostomy and colostomy) that allows the transplant team to monitor the transplanted organ. Unless the stoma cannot be reconnected or unless frequent and severe episodes of rejection develop, the stoma is usually a temporary situation. After a period of time which differs from patient to patient (usually between 6-12 months), the stoma will be closed. The stoma closure is a small operation that, if not complicated, requires few days in the hospital.
In addition to a stoma, your child will have a tube called a “Gastro-jejunostomy feeding tube” coming out from the skin. This tube is inserted during the operation through the skin and into the GI tract. It is formed with a gastric end and a jejunal end which run together, one inside the other. The gastric end is shorter, terminates in the stomach, and is usually used to decompress the stomach when distended or to administer medications. The jejunal portion of the feeding tube is longer, ends in the jejunal lumen, and is almost exclusively used for supplemental tube feeding when necessary. The gastro-jejunostomy tube is usually removed after a few months or whenever reasonable nutritional independence is achieved. In selected cases, the gastro-jejunostomy tube is not placed.
Inpatient Post-Operative Surgical Care
After surgery, your child will be taken to the pediatric intensive care unit where close monitoring will occur. He/She will remain on a machine to help them to breathe (ventilator) and the tubes and drains mentioned above will be in place. Special mechanical boots will remain in place to prevent blood clots in the legs.
Once stabilized, your child will be transferred to the children’s floor where family can begin to learn post transplant care. Family members and visitors may stay according to hospital policy. The length of the hospital stay is very individualized and depends on the rate of recovery. A typical length of hospital stay ranges from four to six weeks, but can vary greatly depending on severity of illness prior to transplant and complications after surgery.