Bone Marrow Transplant in Children: Do’s & Don’ts Everyone should Know | Manipal Hospital Yelahanka

Hello everyone. I'm Dr. Aarti. I'm a consultant in pediatric hemato-oncology and BMT at Manipal Hospitals, Yelahanka. >> What happens during bone marrow transplantation? >> So, bone marrow transplant is a procedure by which we replace the diseased bone marrow with normal and fully functional new donor cells. So, this can be used to address various problems in the bone marrow such as involving hemoglobin like in hemoglobinopathies, thalassemia, sickle cell anemia, or white cells like in an immunodeficiency or in high-risk leukemia. Sometimes involving platelets like in Wiskott-Aldrich syndrome. >> Is the transplant itself a major surgery? >> So, the common misconception is that transplant is a surgery. So, what you have to first understand is transplant is not a surgery. It is a medical procedure. What we do during transplant is we give something called conditioning. So, in this whatever the problem is there with the diseased bone marrow, that is taken care of. So, we create physical space. We also decrease the immunity of the patient so that they can accept new cells. And we also prepare the body to accept the new donor cells. After which we do the stem cell infusion. So, stem cell infusion is a simple process like giving blood transfusion only. How it is collected from the donor is by a simple process which is like a blood donation. So, it would take about 2 to 3 hours. So, the taking of cells is by a process called apheresis and giving it to the patient is like a blood transfusion itself. So, there is no surgery involved in bone marrow transplantation. >> If you had to give parents one important message during BMT, what would it be? >> So, what parents have to be aware is it's a long process which requires a lot of follow-up. So, generally we want to prepare the parents not just about the BMT procedure, but also the need for follow-up and that they have to be extremely alert and aware about what the complications can be. So, they have to not waste any sort of time. If there's any fever, they have to report to us immediately. If the child gets sick, looks dull, lethargic, not eating properly, vomiting a couple of times, or has rash in the body. So, any issue has to come to the notice of the treating team as early as possible. >> What should parents do to reduce the risk of infection? >> So, we generally tend to isolate these patients. We tell the parents that they should strictly avoid visitors. Hygiene precautions are to be maintained to the T, right from taking bath every day, ensuring the nails are cut and clean. Bottom care has to be ensured. Oral care has to be ensured. So, by doing all this, we can stay away from infection as much as possible. Even with respect to food, we always advise only cooked food, which is completely boiled and fresh. So, we advise them to give only home-cooked food. Any food from outside and hotels are to be completely avoided. >> What should a parent do if the child develops a fever? >> So, if there is a fever, it depends on what the counts are. Usually, the child gets discharged by probably 15 to 20 days after bone marrow transplant, depending on how smooth the process was, and how well the child is, and how fit the child is for discharge. So, after the transplant procedure, when the child is at home, any fever, you have to bring the child immediately to the hospital. >> What if the child doesn't have a fever, but looks unusually sleepy or isn't eating? >> So, sometimes after transplant also, the white cell count may be up and down, because there can be intercurrent infections. Sometimes, it can be because of a drug-induced cytopenia, we say, where the WBCs are low. Therefore, the child is at risk of infection easily up to 6 to 8 months after transplant, more so in the early period of 2 to 3 months. So, when the white cell count is low, usually, they may not manifest with fever. They may just look dull. They may look lethargic, and that will be the only sign of an underlying infection. So, if your child is unusually dull or lethargic or is not eating properly, you have to bring them to the hospital. >> Food is one of the biggest concerns for parents. What should a child eat during BMT? >> So, during the time of BMT, we have a lot of food restrictions. We sometimes try to avoid non-vegetarian food. We also avoid milk and milk products because the gut is extremely sensitive and the toxicity of therapy that we use, the chemotherapy agents which are used are prone to cause something called mucositis. Mucositis is where the entire layer of your gut tends to peel off because of a side effect. It's a side effect. Like just how it produces the required effect, this is an unavoidable side effect. Therefore, the gut will be extremely sensitive and we want to give simple foods which are easy to digest during the period of BMT. And even after BMT, even after discharge, usually we try to introduce foods one by one based on the child's tolerance. How we can generally think of is or how I would advise my parents to give to their child will be like how you will wean a 6-month-old baby. So, from something which is mashable to something that is very easily digestible, you go on increasing. Generally, eggs and milk are introduced at least 2 months after BMT. All this is variable, so you will have to follow what your doctor advises you and you have to be completely compliant when it comes to food and nutrition. >> What about fruits? >> So, fruits like in other oncology patients also, because these patients are prone to be neutropenic, we want to avoid fruits which have a thin peel. So, thin peel equals increased risk of infection. So, we can use fruits which have a thick peel like banana, pomegranate, mosambi orange. Usually, these are the fruits that are easily acceptable also and are safe for the neutropenic patients. There are arguments about whether neutropenic diet has to be followed in oncology patients. When it comes to BMT, we are very strict about the nutrition precautions. So, sticking to these fruits will probably be safe for your child. >> Can parents give restaurant food or food brought from outside? >> So, that's a big no. Outside food, it may come hot, but you never know when it was cooked. So, we always want the children to be fed with food which is freshly prepared and made at home. Oily and spicy food and outside food especially will increase the risk of gastritis. During BMT, the children are already on multiple medications and are prone for gastritis. So, keeping restaurant food completely avoided will be the best for your child. >> What if a child doesn't want to eat? >> So, we generally tend to tell parents to use small quantities and more frequent meals. Because for the child to have a normal appetite and to go back to being normal, eating like normal, will easily take about 45 to 60 days after BMT. So, it's important that we respect the child's preferences and give the options of whatever safe foods that have been advised by your doctor. It can be introduced in a staged fashion. If they do not have appetite or they've had a recent admission, they're feeling weak, then it's best to give small small quantity of foods in as frequent meals so that we also avoid the risk of vomiting. >> Why is mouth care so important during BMT? >> So, mouth care, like we know, these are mucosal surfaces like the nasal mucosa, oral mucosa, and similarly the perianal, rectal entry. So, these are mucosal surfaces which are going to be affected by your mucositis during the toxic chemotherapy conditioning. So, these are also entry points of infection for your child. So, if we do not take care of the oral hygiene and the bottom care, they are going to be source of infection for your child. So, not just the source of infection, it can cause extreme pain when there is a severe mucositis. And that will in turn affect your child's intake and can also cause spread of infection from the mucosal surface into the bloodstream, which can result in something called sepsis, which is a severe bloodstream mediated infection. >> What should parents do if the child develops painful mouth ulcers? >> So usually during BMT, we ensure oral care and bottom care are a part of daily regimen and usually our nurses take care of both of it. And it is something that is practiced as a routine in most of the transplant centers as well. So sometimes when there is severe mucositis, it is not possible to do brushing. So we generally tend to clean the oral mucosa and the buccal mucosa and the teeth with the gauze dipped in chlorhexidine or other mouth washes which are advised by your doctor. So ensuring hygiene is most important. Whether we can brush or not depends on how the child is responding to treatment and what is the stage of mucositis that is present. >> Can a child bathe during BMT? >> So bathing is compulsory. So we ensure at least twice a day the child is completely wiped. Sometimes it is not possible that a complete bath can be given although we try on the normal days for the child. Even if the child is sick, is unable to move from the bed or is feeling weak or has a fever, ensuring the child is wiped morning and evening is very important to prevent skin from being a source of infection. >> What about nails and skin care? >> So nail and skin care is also important. Nails we cannot cut when the platelets are low or when the counts are low because it can the small cuts can lead to infection. We have to be extremely careful about that. But ensuring cleanliness and personal hygiene is very important. >> You mentioned infection prevention. Why is bowel and bottom care important? >> So mucositis will involve from mouth till the anal mucosa. So similarly your gut is also going to be involved, which is why having loose stools, abdominal pain are very common side effects and common source of infection during the post-transplant period. So, therefore, ensuring good gut rest whenever it is required or as and when this uh it is advised to you by your doctor is very important. So, keeping simple foods, easily digestible food will give good gut rest. At the same time, it will also ensure there is an ongoing gut motility so that stasis and gut becoming a source of infection in future can also be avoided. >> So, if the child hasn't passed stools, should parents wait? >> So, it has to be brought to the notice of doctor. Usually, it is a part of our transplant checklist, and our nurses and our doctors are going to be monitoring and asking you day in and out whether the child has passed stools. So, we do something called sitz bath on a regular basis. This will help relax the pelvic floor muscles, and thereby passing stools will be easy for the child, especially if they are having chronic constipation. So, ensuring they pass stools will prevent cuts in the anal mucosa, and these cuts therefore will not be a source of infection in future. So, bowel and bottom care is very, very important. >> Many parents become afraid of letting their child move around. Should the child remain in bed? >> So, if the child has energy, the child should definitely be moving around even inside the BMT unit. We encourage them to walk, change the beds within the room, and try to be as ambulatory as possible. One, it is psychologically the child will feel better. The child will uh we also try to keep them engaged in play. We try to get them some toys so that they are not completely feeling sick. And uh moving around is important to prevent bed sores, also. Although in 30 days, the chances that they will develop bed sore is minimal, but ensuring that ambulation becomes very important to prevent these complications. >> Can the child go back to the park? >> So, after discharge in the BMT period, like up to 2 months, we try to uh keep them as secluded as possible because this is the period when they are most prone for infection. And because it's a very immediate post-transplant period, the infection can end up being severe. So, after 3 months, if the child is completely well, has had a uh seamless course during the post-transplant period also, depending on your doctor's advice, it is possible to take the child out for a walk sometime when it is not crowded. So, always open places which are not crowded are safe, while closed spaces where we're going to be re-breathing each other's air uh is always unsafe. It is the same for transplant patients. It's also the same for oncology patients. >> What about grandparents, siblings, and other relatives? Can they visit? >> So, it's a big no-no. We generally tell the parents that, of course, everybody wants to visit in goodwill, but in the post-transplant period and preferably 1 month before transplant, it is important that we decide who's going to be the primary caregiver. So, probably the parents or if it is one of the grandparents, only one person should be involved in uh close care of the child, which includes feeding the child, giving the medications on time, so that things are not missed. And the more interaction we have with people, the chance of acquiring an infection is higher. It may be a a simple cold or cough for uh the relative, but if they visit a post-transplant child and go, it can come to as severe as a pneumonia in the patient. So, it's always important we avoid visitors, and uh it's it's probably politely just refuse them telling the doctor has told uh we cannot encourage visitors during this period. >> What is the emotional side of BMT? >> Um the parents have to be prepared for a long stay of admission. It's a complex procedure where we're completely changing the hematopoietic system of a child. So, sometimes there can be unanticipated complications, sometimes some anticipated complications. So, definitely parents also have to be mentally prepared. We have multiple sessions of counseling where we try to make them understand about each segment, what happens before BMT, how do we prepare a patient, what do we anticipate on day-to-day basis, and towards engraftment, and as the recovery happens, what to anticipate. And even before discharge, we have detailed counseling with the entire family where each one's role is clearly defined. So, the parents being well-informed and mentally prepared, they will be like a strong backbone for the child because children always take strength from what the parents are. So, if the parents are strong and they're prepared, the child is also going to have a seamless recovery in most scenarios. What are the do's and don'ts during BMT? So, the main do's are first and foremost thing you will have to completely listen to the doctor and completely stick to what is being told to you with respect to medications, with respect to diet, hygiene precautions. So, once we follow all this, we are mostly negating all the unanticipated complications. So, sticking to protocols is very important. Bringing to notice of the doctor if you find any variation in your child's behavior or the energy levels, that is also important. If you notice some small boils in the body, any rash, bring it to the notice of your doctor. Most of the complications with the good advancement in medications are very well treatable, and the chance of recovery is very good after BMT for the child. So, bringing it to the notice at the earliest is what is going to really make a lot of difference in your child's recovery.