FAQs: Newborns & Infants
It's natural to have lots of questions about your newborn or infant's care and treatment. While you may find the following frequently asked questions helpful, you should always contact your doctor or Hemophilia Treatment Centre for medical advice.
- Is circumcision recommended for baby boys with hemophilia? What are the potential complications, and how long can parents wait to decide?
- When a baby starts teething, is there excessive bleeding when teeth come in? What should we expect and look out for?
- What should we look out for when examining a baby at bath time and checking for bleeds?
- Is it normal if a baby who has hemophilia has a very red anus? Is this something to be concerned about?
- What treatment or actions need to be taken for a child with mild hemophilia?
- What are some strategies to help parents to cope with the diagnosis of hemophilia in a new baby? How do we deal with the stress and feelings of resentment toward other parents who's babies are healthy?
- When is it necessary to tell others that a baby has been diagnosed with hemophilia?
- What are some tips for protecting a baby around the house or when playing?
- If a new baby is diagnosed with hemophilia, should other family members be tested? What if there is no family history of the condition? Might others be carriers?
- What are some ways to help extended family members cope with their shock or fear over a new baby's hemophilia diagnosis?
- What are the risks of using factor treatments? Can they transmit diseases?
- If someone with hemophilia needs a blood transfusion, do they need to worry about the safety of the blood supply?
Q. Is circumcision recommended for baby boys with hemophilia? What are the potential complications, and how long can parents wait to decide?
The decision to circumcise a son is deeply personal. It is commonly performed as part of a religious practice, sometimes for medical reasons, or simply as a personal preference. Although it is a widely debated topic, there is no "right" answer. If there is a medical reason, or there are irrevocable religious reasons, and parents decide to go through with the procedure, then it must be carried out very carefully with full hemophilia protection. This may require that the baby stays in the hospital for a few days to receive factor replacement therapy. Before deciding, it is very important that parents discuss their options with their healthcare team and be fully prepared for the procedure.
Q. When a baby starts teething, is there excessive bleeding when teeth come in? What should we expect and look out for?
A. Most babies, even with severe hemophilia, don't have much trouble when their teeth come in. To help them with teething pain, ask the baby's healthcare team for recommended teething aids. Some parents have reported that a cold facecloth to chew on seems to relieve some of the discomfort for their baby. Even when babies start to lose their baby teeth, the teeth are pushed out very slowly so there is usually only a minimal amount of bleeding.
A more common mouth bleed is not caused by teething but rather an injury to the mouth. The delicate piece of tissue between the top lip and the gum is often injured in babies. It may seem like there is excessive bleeding because the babies saliva will mix with the blood, but generally the bleed will stop quickly. However, in a child with severe hemophilia, the bleed may restart because healing is easily disturbed by movement during eating or chattering. If this occurs or you have concerns, speak to your hemophilia care team.
Q. What should we look out for when examining a baby at bath time and checking for bleeds?
A. Newborns and infants can't tell you about their pain or discomfort, so it is up to parents and other caretakers to routinely check for signs of a bleed. Bath time is a great opportunity to examine a baby in a fun and relaxed atmosphere. To prevent slipping, use a sponge rubber mat to line the tub. You will probably notice external bleeds (cuts and scrapes) easily, but internal bleeds in joints, muscles, or the head are more difficult to diagnose and are more dangerous to your child. Here are some steps you can take:
- Compare one arm to the other, and one leg to the other.
- Are both limbs the same size and shape?
- Are both arms moving and bending equally well?
- Are both legs and feet moving and bending in the same way?
- Are there any signs of swelling or bruising?
- Check for any bruises on their body that might indicate that they have fallen which could have caused internal bleeding.
Q. Is it normal if a baby who has hemophilia has a very red anus? Is this something to be concerned about?
A. A lot of babies develop small tears around the anus. They are called "anal fissures" and are a result of passing hard stools. It upsets the baby because it is painful when they have a bowel movement. Babies with hemophilia may have a little more bleeding than usual. Fissures heal up easily if stools are softened, so ask the family doctor or pediatrician for guidance with this. A baby with hemophilia who has an anal fissure doesn't usually require specific hemophilia treatment, but speak to their hemophilia care team if you have concerns.
Q. What treatment or actions need to be taken for a child with mild hemophilia?
A. A child with mild hemophilia has some naturally occurring clotting factor in their blood, which is usually enough to prevent most bleeding episodes. If the child suffers an injury, you should call their nurse coordinator for advice, and if necessary, the child should be taken to the hospital for an assessment.
Q. What are some strategies to help parents to cope with the diagnosis of hemophilia in a new baby? How do we deal with the stress and feelings of resentment toward other parents who's babies are healthy?
A. Most parents expect the birth of a baby to be a time of joy and celebration. However, new parents are often surprised to find that they are often anxious and have feelings of inadequacy. When a baby is diagnosed with a chronic illness, whether at birth or during the child's early years, it can be emotionally draining and add to a new parent's worries and insecurities.
It is not uncommon for parents to feel overwhelmed, shocked, frightened, angry, or even resentful. Dealing with the diagnosis of hemophilia—even if parents are prepared for the possibility because of a known family history—is difficult. To reduce the amount of emotional impact on the parents, the child, and the rest of the family, it is very important to keep a positive outlook and reach out to the support people available. Families should remember that they are not alone, and there are many services to help people adjust to being new parents.
Q. When is it necessary to tell others that a baby has been diagnosed with hemophilia?
A. Telling people about a baby's hemophilia diagnosis is a personal decision. However, if you are leaving your child in someone else's care it is important that they are aware of their condition. Your child might be cared for by other people including family, friends, babysitters, teachers, and neighbours. Sharing information with them is very helpful and is the best way to prevent misunderstanding and anxiety about your child's care.
Q. What are some tips for protecting a baby around the house or when playing?
A. The same care that all parents take in childproofing their home and purchasing toys applies to households with a baby with hemophilia. You should cuddle, play with, and enjoy your baby just like any other child. Once babies are around four months old, they may start rocking from side to side, rolling over, creeping, crawling, and lifting themselves up against furniture. Take the same cautionary measures every parent should take to protect them by removing pointed objects, covering table corners with protectors, securing bookshelves to walls, and removing any objects that have a dangling cord that can be grabbed and pulled down on them. You may also want to purchase crib padding.
As early as 7 or 8 months babies might start standing and taking their first steps. During these stages you may want to use knee and elbow pads to prevent bruising. Many Hemophilia Treatment Centres (HTCs) also recommend the use of helmets for children up to the age of 2. It is a good idea to discuss use of padding and helmets with your family doctor or a member of your HTC team. Later in life, children with hemophilia may experience bleeds in his ankles and toes—so help protect his ankles and feet as the child grows up by purchasing good quality footwear.
As your child grows, take note of his or her activity level, the amount of bruising he or she has, and the amount of treatment needed so that you can make an informed decision with the medical team. You can also ask your healthcare team to provide additional information on safety issues around the home and at play.
Q. If a new baby is diagnosed with hemophilia, should other family members be tested? What if there is no family history of the condition? Might others be carriers?
A. Dealing with a diagnosis of hemophilia is difficult, not just for the patient and parents, but for the extended family as well. In about 3 out of 10 cases, a diagnosis of hemophilia is unexpected as there is no family history of the condition. The hemophilia gene may have been passed "silently" through generations without anyone in the family showing symptoms. Or the gene mutation could have occurred spontaneously for the first time in a single family member, rather than being inherited.
In a family with no previous history of hemophilia, the carrier status is usually sought in other family members after a first-time diagnosis in a baby or young child. Healthcare professionals will discuss the option of having the women in the family undergo genetic testing to determine if someone is a carrier of the hemophilia gene. A positive carrier diagnosis in one female family member suggests there may be other females affected—and could affect their decisions about having children. Hemophilia Treatment Centres can provide genetic testing as well as follow-up counseling from a genetic counselor or family physician.
Q. What are some ways to help extended family members cope with their shock or fear over a new baby's hemophilia diagnosis?
A. It's natural for extended family to feel shock and discomfort at learning that a loved one's baby has hemophilia. They may have fears about their own children's health, or be nervous about caring for the affected child. Education and open communication is key. Make sure family members understand how hemophilia is passed through families, and talk to healthcare providers about who else should be tested. Help family members to learn about what special care the child needs so they can feel more confident getting involved. Most of all, remind everyone that a new baby is a joy regardless of his or her health—and this one will need the support of the entire family.
Q. What are the risks of using factor treatments? Can they transmit diseases?
A. Recombinant factor concentrates were developed in the 1990s to treat both hemophilia A and hemophilia B, and the risks of being infected by these products are very very small. There are rigorous safeguards in place during the manufacture of these products in order to prevent the transmission of diseases. Factor concentrates first go through a purification process and then the final product undergoes a viral inactivation process. This step involves using different heat treatments and/or solvent detergents to kill any viruses, which might still be in the factor concentrate. These viral inactivation methods are very effective in killing HIV, hepatitis B, and hepatitis C. The concentrate is then further tested for the presence of bacteria or viruses, and to make sure it meets all manufacturing standards, including potency.
As a result, in Canada:
- Since 1988, there have been no HIV infections in people with hemophilia from factor concentrates
- Since 1990, there have been no hepatitis C infections in people with hemophilia from factor concentrates
Q. If someone with hemophilia needs a blood transfusion, do they need to worry about the safety of the blood supply?
A. The modern factor concentrates used in Canada today, whether plasma-derived or recombinant, have never been known to transmit diseases like HIV, hepatitis B, or hepatitis C. Hepatitis B infection occurs in only about 1 in a million blood transfusions. Those with hemophilia have a greater chance of needing a blood transfusion, but the risk of acquiring Hepatitis B need not be a concern since because they will have been vaccinated against the virus.
For people with hemophilia who received blood products in the 1970s and 1980s, hepatitis C (for which there is no vaccine available) was a serious concern. However, today donor screening methods and viral inactivation procedures have reduced the risk of being infected with hepatitis C to near zero. Fortunately, HIV infection through factor concentrates is also a thing of the past.
It is possible that a new unknown agent could infect the blood supply. But those responsible for hemophilia care and for the blood system, including the CHS, consumer groups, the blood transfusion service (Canadian Blood Services) and organizations around the world, are watchful of new dangers and take their responsibility for the safety of blood products very seriously.