One of the most common questions parents of a newly diagnosed Shwachman-Diamond Syndrome child ask is, "What can we expect when our child has a bone marrow biopsy?"
Most hematologists/oncologists perform the bone marrow biopsy (BMB) at the same time they perform a bone marrow aspiration (BMA). If you are unsure whether or not both a bone marrow biopsy and a bone marrow aspiration will be performed at the same time, be sure to ask your child's doctor. Protocol for bone marrow biopsies vary from hospital to hospital , but the actual BMB/BMA procedures themselves are the same. Some hospital protocols will allow one parent to stay in the OR or procedure room while the bone marrow biopsy is being performed, while others will allow a parent to remain in the room until the child is put under.
Your child will be required to fast prior to the bone marrow biopsy procedure. Some doctors will allow clear liquids up to six hours prior to the procedure, but this also varies from hospital to hospital. Be sure to ask your child's doctor what time to begin the fast and about clear liquids. You will also need to ask which medications your child will be allowed to take the morning of his bone marrow biopsy. You will likely be asked to arrive approximately two hours prior to the procedure. After you check in with the nurse or front desk, your child will have his IV placed and blood drawn for routine labs (or any extra labs that may be necessary). Some hospitals may require a pre-operative appointment before the BMB.
Soon after your child's IV is placed, you'll be asked to escort him to the OR or procedure room. The anesthesiologist will go through a list of questions and examine your child. At this point, your child will be put to sleep and you will be asked to leave the procedure room if hospital protocol so requires. The BMB/BMA usually only takes about twenty minutes total.
The biopsy site, usually the iliac crest (in the back, just above the hip), is first cleaned with Betadine. The hematologist will then inject a solution of Lidocaine around the biopsy site. The bone marrow aspiration needle with stylet is then inserted, penetrates the bone and enters the bone marrow cavity. The stylet is then removed and marrow is extracted using a syringe. Once the marrow is extracted, the needle is removed. For the biopsy portion of the procedure, a different needle is used. Once the biopsy needle is inserted and hits bone, the stylet is removed. The biopsy needle is then moved in an alternating clockwise-counterclockwise motion. The biopsy needle reminds me of an old fashioned corkscrew! Once the biopsy sample is obtained, the nurse or doctor will apply gauze to the site with pressure to stop any bleeding. A sterile dressing is then placed over the biopsy site and should remain for 24-48 hours. Following the procedure, your child will be moved to the recovery room. Once he starts to wake up, you will be called back to be with him. Once he is able to sit up and drink, his IV will be removed and you will be discharged shortly thereafter.
Your child will likely be a bit unsteady on his feet at first, but that will improve quickly. The biopsy site will cause him to have mild to moderate pain for a day or two following the procedure. The doctor will give you instructions on what medications can be used for pain management. My boys have had fourteen to fifteen BMBs each and we have never had any complications. If you notice excessive bleeding or the biopsy site seems to be infected contact your doctor immediately.
Over the years, we have developed what we call our "Bone Marrow Biopsy Day Strategy". Hopefully some of what we have learned over the years will be of help to you.
If you have a child who has never had an IV placed before or who is afraid of getting an IV, you can request a special numbing cream, such as EMLA, be used. The cream is placed on potential IV sites one hour prior to the IV being started. Keep in mind that some children might find it worse using EMLA because the hour of waiting with the EMLA causes them anxiety.
The night before the marrow biopsy, we usually allow our boys to stay up later and eat something just before bed. This helps because they then sleep in and do not wake up until we have to leave for the hospital and they don't have to spend time around the house not following their usual breakfast routine. We also remember to bring along some of their favorite snacks and drinks to the hospital so that they can eat as soon as the doctors allow. Some hospitals will offer your child a breakfast or lunch tray.
Bringing stuffed animals or a favorite toy along is also very helpful. If your child likes to play doctor, a toy doctor's bag with doctor's tools can be a great coping tool. Some hospitals will give children splints, tape, IV tubing and other goodies for your child's doctor bag. It can never hurt to ask! Keep in mind that some hospitals will not allow any personal items in the OR, while others will allow one or two. You'll need to check hospital policy ahead of time, so as not to cause your child any undo stress if his favorite toy can't come along with him to the OR for his procedure.
If you have a child who has to have repeat bone marrow biopsies, and he is scared, you might consider purchasing an anxiety workbook to help your child cope with his repeat medical procedures. You can even make your own "Bone Marrow Biopsy Day Book". Children often want to know what
happens while they are asleep, and taking pictures is a great way to show them.. In our case, we have taken many pictures over the years and also had a wonderful doctor who took pictures for us during the entire procedure. We used these pictures to create a Creative Memories Storybook for our boys titled, "Bone Marrow Biopsy Day". This book was a big hit with not only my children, but with the entire hospital staff. My son, Joseph, brought the book in the next time he had his BMB and had the nurses, doctors and child life specialists autograph the book. In fact, Child Life at the hospital liked our "Bone Marrow Biopsy Day" book so much that we donated a copy to the hospital to help other families understand and cope with Bone Marrow Biopsy Day.
For many children. Like those with Shwachman-Diamond Syndrome, repeat medical procedures is a normal part of life. As parents, we can help our children cope by preparing ourselves and equipping them with the tools they need to cope.