Over the past 20 years, younger and smaller premature babies have been able to survive because of the special advanced care they receive. Part of this care involves support using oxygen and a breathing machine (ventilator). There has been an increase in the chronic lung disease called Bronchopulmonary Dysplasia (BPD) partly as a result of premature lungs and prolonged breathing support.
Babies with BPD often need to use extra oxygen for many months. Many babies are sent home on oxygen and other medicines. Frequent follow up visits may be needed for months or even years. A baby with BPD needs special treatments, good nutrition, and a great supply of love and patience.
The Infant Respiratory System
Your baby’s breathing system, has four main parts.
The airways
The air sacs called alveoli
The blood vessels
The chest wall and diaphragm which support the lungs
The airways carry air in and out of the lungs. The airways start with the nose or mouth and go into the throat, the voicebox, and the windpipe. The windpipe splits into smaller tubes called bronchi, which split again and again, becoming even smaller. The structure looks like a tree turned upside down. The windpipe is the main trunk of the tree. The bronchi are smaller and smaller branches of the tree. The smallest bronchi are called bronchioles. The airways are formed by the end of the fourth month of pregnancy.
At the end of all these branches are the air sacs (alveoli). It is here that gas exchange, the main work of the lungs, takes place. Oxygen gas goes from the air sacs into the blood, and the waste gas (carbon dioxide) passes from the blood into the air sacs to be exhaled. The air sacs are like little bubbles. Air sacs make up the spongy tissue of the lungs. The air sacs develop slowly. By the end of a 9-month pregnancy, there are about 20 million air sacs in a baby’s lungs. In a baby born early, there are fewer than that number. For the next seven or eight years after birth, more air sacs will grow. Most of this growth happens in the first two years of life. Adults have 200 to 300 million air sacs in their lungs. After age seven or eight, the lungs will get longer, but the air sacs have already developed.
Blood is pumped from the heart through many branching blood vessels to millions of tiny blood vessels. The tiny blood vessels (capillaries) pass by the air sacs in the lungs. They have thin walls through which oxygen and carbon dioxide pass. The blood then goes from the capillaries into larger blood vessels. The blood flows back into the other side of the heart and is pumped all over the body. The oxygen in the blood is carried to the whole body. Our body needs oxygen in order to function.
The chest wall which includes the breastbone, the ribs, the spine, and muscles supports the lungs. The diaphragm is a muscle wall between the lungs and the organs in the abdomen. It is the main muscle of breathing. The chest and diaphragm move as we take a breath and pull air into our lungs.
Some babies born too early have a breathing problem called Respiratory Distress Syndrome (RDS). BPD is a lung problem resulting from prematurity, not enough surfactant production, and from treatment of RDS. There may be other reasons such as early infection. Your baby received oxygen and ventilator treatment for his RDS. Very high oxygen levels and high ventilator pressure can scar the lungs. Babies who experiences these things are at higher risk for developing BPD. Lung changes with BPD vary greatly. Some parts of the lung may have severe damage; other parts may be nearly normal. The degree of lung damage is often worse in babies who are more premature and less severe in babies born closer to their due date. The lung injury is widespread and can involve all parts of the lungs. With BPD there is also a loss of cilia (tiny hair-like growths that help keep the lungs clean) which makes it hard for the baby’s lungs to remove mucus.
Injury to the inside of the lungs causes excess mucus. This can increase your baby’s chances of getting infections. Mucus may also block some airways and make it hard to move air in and out. Air moving through these airways that are partly blocked may make a wheezing sound. Scarring or damage to the air sacs of the lungs and the lungs’ blood vessels also makes it harder for oxygen to get into the blood and for carbon dioxide to get out. Lungs that are damaged or scarred are stiffer and less stretchy than normal lung tissue. For this reason, your baby must work harder at breathing. Your baby may breathe faster than normal. Despite this hard work, he still may have problems getting enough oxygen into the blood and carbon dioxide out of it.
BPD is diagnosed if a baby with RDS has entered a time when we would expect him to improve, but he can’t be “weaned” from the breathing machine or from oxygen. Also a baby with BPD has certain changes in his lungs that can be seen on a chest x-ray. Most studies show 10 to 20% of babies with RDS will develop BPD.
BPD ranges from mild in a baby who needs only low doses of oxygen for a few weeks to severe in a baby who needs a breathing machine and oxygen for many years. A child with mild BPD may have few problems such as wheezing or frequent lung infections. A child with more severe BPD may have frequent hospitalizations, infections, poor growth, or holding on to fluid. One goal of treatment is to decrease these problems.
Recovery from BPD is slow because it depends upon growth of new lung tissue. A slow improvement is normal. By school age, most children with BPD seem to breathe normally. Sometimes, their lungs may not be normal, but they are much better.
There are many changes that you might notice in your baby that may be a result of his BPD. In some babies, these changes might not be a cause for concern. In other babies, the same changes might mean you should call a nurse or a doctor. It is vital for you to know what these changes are and what causes them. Then, you can call if your baby shows these signs.
Breathing Changes
Rapid breathing may be a sign of breathing trouble from infection or fluid in the lungs. You should get used to your baby’s “normal” breathing rate and pattern so that you can be aware of any major changes. You can count your baby’s respiratory rate by watching or feeling his chest rise with each breath for sixty seconds. It is best to count the rate when your baby is sleeping. It is normal for your baby’s breathing rate to change with crying (increase) or sleeping (decrease).
Retractions are seen in your baby’s chest when he is breathing in. If his chest caves in between the ribs or at the top or bottom of the breastbone, then your baby has retractions. This movement shows that your baby is using as many muscles as he can to help with breathing. This is a sign that your baby is having trouble breathing.
Nasal flaring is when the nostrils flare outward when he breathes in. This is also a sign that your baby is working extra hard to breathe.
Wheezing is a whistling noise that you may hear when your baby breathes in or out. Wheezing is caused by the movement of air through blocked airways. Sometimes you can hear wheezing with your ears, and sometimes you can only hear it with a stethoscope. Wheezing may be heard when your baby gets a cold or other infection. It may also be part of your baby’s BPD. Sometimes babies with BPD have airways that close down partly (constrict) at times. Wheezing is a sign that your baby’s airways are blocked.
Grunting is not a normal sound of breathing. It is your baby’s way of trying to keep some of the smaller airways open. It is a sound heard as your baby tries to breathe out. This is often the first sign of breathing distress in newborns.
Skin color change may go along with any of the signs described above. If your baby has trouble breathing, he may not be getting enough oxygen. When the blood is low in oxygen, it is not as red as normal. You may notice your baby will get pale as breathing becomes harder. You may also notice a gray or blue tint around your baby’s lips or fingernails. The inside of the baby’s mouth and tongue may appear darker than normal. Cyanosis describes the blue color of the skin when the body is not getting enough oxygen. Your baby may be a bit pale due to his chronic illness, but the lips and fingernails should be pink if he is receiving enough oxygen. If your baby is on oxygen, you can increase the amount. Color change is a clear sign of breathing distress.
Coughing is a normal way to remove mucus from the lungs. There are many kinds of coughs. A dry, hacky cough can be caused by many things and may go along with other signs of breathing problems. A cough may be “wet” or “productive” meaning that it sounds as though your baby is trying to or is coughing up mucus. When babies and young children cough mucus out of their lungs, they usually swallow it. If too much mucus is swallowed, it is not unusual for them to throw up or vomit. As mentioned before, a cough once in a while is normal. A cough that worsens may be an infection (for example, pneumonia) or extra fluid in the lungs.
Swelling from fluid build up is also a change you might notice. This may be seen in the hands, feet, or face. You may also notice swelling on one side of the body if your baby has been sleeping or lying in a certain way for a long time. Fluid tends to “settle” in lower parts of the body. Swelling may also occur in your baby’s lungs causing him to breathe harder. Medicines such as Lasix® may be given to your baby to help him get rid of this extra fluid. Extra fluid may be a sign the baby’s heart is getting weaker.
Over time, you will get to know the normal or baseline breathing pattern and skin color for your baby. The first sign that your baby may be ill begins with changes in breathing, skin color, and fluid build up in body and lungs. It is vital for you to call the doctor or nurse when you see these changes, or if you are concerned, or have questions.
Growth and Feeding
Poor growth in babies with BPD is caused by many things. Your baby will use more calories for the increased work of breathing. He may not be hungry because he doesn’t feel well, or not have enough energy to eat. A baby who has had prolonged oral suctioning, tube feedings, or a breathing tube may take longer to gain normal feeding skills.
Vomiting can be common. Your baby may vomit because his stomach is full of mucus. He may vomit because he has less room in his stomach than normal, or he may have Gastroesophageal Reflux (GER). GER is caused by immature or weak muscles at the entrance to the stomach. Formula that has been swallowed passes back into the tube (esophagus) that connects the stomach and mouth, and your baby may then spit up.
Feeding problems are common and may be very frustrating for you. Lack of hunger, slow growth, and vomiting may be signs of feeding problems, breathing problems, or both. As you get to know your baby, you will learn what is normal for him. You will also begin to notice the changes that are not normal and what they mean. If you see these changes and are concerned or have questions, you should call your doctor or nurse.
The Course of BPD
Each baby is different. A baby with severe BPD has more problems than a baby with mild BPD. However, two babies with the same degree of BPD may have different problems in the long run. The good news is that BPD tends to improve as the baby gets older as long as he keeps growing well.
Mild BPD
A baby with mild BPD may come home with no extra medicines or oxygen, or maybe just a special formula, a few medicines, or some extra oxygen. If the BPD is truly mild, these special measures will not be needed after a few months. This baby may still have a somewhat faster breathing rate than normal, and may breathe harder than normal. Colds will last a little longer and this baby may be sicker with a cold than other babies would be. This baby may have a problem with wheezing. He will be treated with asthma medicines to control the wheezing.
Severe BPD
If your baby has severe BPD, he will spend a longer time in the hospital before he is strong enough and big enough to go home. Your baby will go home on many medicines and extra oxygen as well. With severe BPD, he may go home on a breathing machine. A baby with severe BPD is often hospitalized many times during the first year due to colds. He just doesn’t have enough strength to deal with them. Your baby uses many extra calories breathing and may not grow as fast as he normally would. Food intake must be watched closely. He may need special formula. He may not have enough energy to take all his feedings by mouth, and may vomit often. He may need to be fed through a tube in his nose or mouth. Your baby’s weight will need to be watched closely.
Lung Function in Older Children with BPD
There is some research available on lung function in older children who had BPD as infants. One study shows some differences from normal lung function in children eight to ten years old. Many older children with BPD may have problems with wheezing and are treated with asthma medicines. Clearly children with milder BPD as infants will have fewer breathing problems when older compared to children with more severe BPD as infants. Children with BPD can often be active in sports. To the best of our knowledge, a person who has had BPD has a normal life span. Since BPD was described in 1967, the oldest patients are now adults and have children of their own.
Growth
Babies with BPD are often small, premature babies. Their growth charts will be adjusted for their early birth. For example, if your baby was 3 months early, a 3-month correction is needed. On his first birthday, he will be plotted on the growth chart at 9 months not 12 months. This is done because he would be only 9 months old if he had been born on time. Correcting for an early birth should also be done in respect to your baby’s development. For instance, a baby born 2 months early will probably sit up about 8 months after birth, not at the normal 6 months. Even with this, most babies with BPD are still small for their age. Our main goal is to maintain steady growth as your baby is going through the first years of life. This steady growth will mean that there is also lung growth. Growth of new lung tissue is crucial for your baby’s recovery from BPD.
The Future
Babies with BPD do get better as they grow. If a steady growth rate can be maintained and your baby’s lung condition is fairly stable, you should expect a slow, gradual improvement. This may not be noticed from week to week or month to month, but looking back over a year, you should be able to see some progress. Many other diseases grow worse with time, but BPD tends to improve. This knowledge may help you see the “light at the end of the tunnel.” Someday your baby will not need all the extra care that he needs now.
The Goals of Treatment
To support normal growth by increasing your baby’s food intake. Your baby has to grow to get better.
To keep the oxygen level in your baby’s blood at a good level. Your baby won’t grow well if he does not get enough oxygen.
To prevent lung infections so that growth of new, healthy lung tissue is not slowed.
Care in the Hospital
Your baby probably has needed a ventilator to help with breathing. He may have needed this for many weeks or even months. He received extra oxygen, too. As he grew stronger, the support from the machine decreased and was then stopped.
Intense nutritional treatment is also part of your baby’s care. He may have received IV feedings also know as TPN or Hyper-Al. Later, feeding may have been by a tube through the nose, mouth or into the stomach. Even later, your baby may have eaten by mouth.
Before You Go Home
Before your baby can go home, he must be stable and his treatments decreased or weaned to a point where they can be done safely at home. Day-to-day progress may seem slow. You can see progress better by looking at your baby over a week or more at a time.
Before you go home, you should feel that you can care for all your baby’s needs. This requires a period of learning, practice, and review. You and others who will take care of the baby must spend time giving all the care your baby needs. The staff will help you learn all you need to know. The care of a child with BPD often includes frequent feedings, medicines, oxygen, and close watching. This can be too much for one person to handle. Therefore, we strongly suggest that two family members and anyone who will be caring for your baby learn all of your child’s care needs.
You will also get to know the care team members who will assist in caring for your baby when you come back for clinic visits or a hospital stay.
It is vital that you feel good feeding your baby while he is still in the hospital. Your baby should be able to take the same amount of formula when you feed him as when the feeding is given by a nurse. Your baby should also be gaining weight in the hospital.
The nurses will help you and your baby’s other care givers learn how to hold him to feed or nurse him in the best way you can. They will also help you learn the cues or signs that your baby makes to tell you that he is hungry or full. The signs are vital to know because they will help your baby grow in size and strength.
Your Child’s Care at Home
If your baby is not growing or is losing weight, changes will need to be made in his care. Babies need to grow in order for their BPD to improve. A baby with BPD will need more medical care as an infant than a healthy, full-term baby would need. Your baby should have a regular doctor that will care for his normal baby needs. This includes check-ups, vaccines, and help with the kinds of questions and problems that come up in any baby’s day to day care.
Some babies with BPD may need care from other types of doctors that focus in the areas of heart, nervous system, feeding, eyes, speech, movement, etc. Your health care team will help refer you to them if they are needed.
Part of regular care is learning what to avoid. Your baby should avoid:
Smoke. This means no one should smoke in the home, or in the car. Smoking must be done outside. Even if you smoke outside, toxins are brought into the house on your body. It is best for your baby if you can quit smoking.
Sick People. Your baby should not be exposed to people who are sick. Every baby will get colds or some infections, but the fewer the better for a baby with BPD. You can lessen the spread of germs by having everyone wash their hands before they touch your baby.
Salt. Avoid extra salt or salty foods since these can cause fluid build-up in the lungs and body.
Oxygen Treatment
A baby needing oxygen at home receives it through a plastic tube that goes under the nose, across the cheeks, and over the ears. Two tiny prongs fit into your baby’s nose. Oxygen passes through the tubing and into your baby’s nose, giving him extra oxygen throughout the day and night. These thin tubes are often secured to the cheeks with tape. Some babies need oxygen like this for 24 hours a day, others for a lesser time.
There are three ways to bring oxygen into the home for your baby. They are the oxygen concentrator, tanks, and liquid oxygen. Babies treated with oxygen need extra moist air, so a humidifier is attached to the main oxygen supply. This moist air keeps the dry oxygen from making airway mucus thicker and stickier. You will have help to decide the best source for your baby.
Oxygen safety is crucial for any one with oxygen at home. Oxygen will make any fire burn more intensely. There should be no smoking, or open flames such as candles or fires in a room where oxygen is in use. There are certain safety aspects with each type of source. You will be taught how to keep your home safe, and how to clean and maintain the equipment.
Nutrition Needs
Probably the greatest challenge you will face in taking your baby home is getting him to eat enough to grow. Babies with BPD are often “fussy eaters.” It may be difficult to get your baby to eat the amount he needs to grow. Because this may be your greatest challenge, it can also be your greatest reward. Feedings provide your baby with calories, electrolytes, and fluid. All of these are vital for growth of new, healthy lung tissue.
It may be hard for you if your baby gains weight slowly, but do not change formulas or add solids before talking with your doctor. Small but even weight gain adds up to growth, and we hope that you can see progress from these slow but steady increases in weight. Some babies with BPD gain weight only after much patience and hard work by their parents. Your pediatrian will advise you on how much to feed your growing baby.
Feeding Methods
At home, most babies with BPD are fed by mouth. Before going home from the hospital, you should learn what type of nipple your baby uses. You should use the same kind of nipple at home since your baby may have trouble feeding well if the type of nipple is changed. You should feed your baby a number of times in the hospital. Your baby should be gaining weight while still in the hospital, and you should be confident that you can accomplish his feedings at home. You will receive special training if your baby needs to be fed through a tube.
Fluid and Electrolytes
Babies with BPD often retain fluid (their bodies hold in water). Because of this, your baby may need to have the amount of fluid he drinks cut back to prevent fluid build up which can cause breathing problems. Your baby may be treated with medicines to get rid of extra fluids and salts. Some of these deplete the body of potassium. In such cases, potassium replacements may need to be given.
Babies with BPD may need blood tests to check levels of blood salts or electrolytes (sodium, chloride, potassium, calcium, or phosphate). Blood tests may be needed when your baby is sick or if his diuretic dose is changed.
Medicines
Often babies are sent home on medicines such as diuretics, supplemental electrolytes (potassium and calcium), digoxin, bronchodilators, inhaled steroids, antibiotics, vitamins, and iron. It is vital for you to know how much and why your baby is getting these, how to give them, and if there are any side effects to watch for. These are discussed later.
You will be taught how to give your baby medicine before he goes home. If you are adding these to your baby’s bottle, it is best to put them in a small amount of formula (1/2 ounce for example) at the beginning of the feeding. Since you are giving this small amount of formula plus medicines when your baby is most hungry, he is more likely to take the full amount. If you mix them into the entire feeding and he doesn’t drink all of it, you will have to guess how much he got. Some medicines should not be mixed in formula. Check with your doctor pharmacist, or nurse about your baby’s medicines.
Apnea Monitors
An apnea monitor is a device that will send an alarm if your baby’s breathing stops even for a short time. Home apnea monitors may be used for certain babies with certain problems. Not all babies with BPD go home with them. If an apnea monitor is prescribed, you will receive special training in how to use it.
When to Call the Doctor
The symptoms below are listed with the most severe ones first. It is vital to call the doctor if your baby has any of these.
Increased trouble breathing: breathing faster, retraction (pulling in of the skin above the collarbones, between the ribs or just below the rib cage)
Increased coughing
Wheezing
Bluish or grayish color to the skin
More crabby or no energy
Fever over 101ºF rectally or ear; or over 100ºF under the arm, not easily controlled with acetaminophen (Tylenol®)
Swelling around the eyes or other parts of the body
Increased vomiting
Increased diarrhea
Increased sweating
When to call your regular doctor and when to call the pulmonary doctor.
This varies with each baby, the doctors involved, and how far it is to your local doctor and to the lung doctor. If you think the problem is due to BPD, call the lung doctor. If not, call your regular doctor. If you are unsure who to call, don’t worry, you can call either one and they will help you decide where to go. Details about who to call should be worked out before you take your baby home.
Common BPD Medicines
Anti-inflammatory drugs
Anti-inflammatories are used to decrease the swelling or inflammation of your baby’s breathing tubes and lungs that cause wheezing and coughing. These are used daily. They are safe when used in low doses. Inhaled steroids are sometimes called corticosteroids. They should not be confused with the muscle-building steroids or anabolic steroids. There are several types:
Flovent®, Vanceril®, Beclovent® and Qvar® are steroid inhalers.
Pulmicort® is a steroid that is used in a mist form.
The side effects can be
thrush, a white coating on the mouth and tongue.
a hoarse cry or voice.
Bronchodilators
Bronchodilators help your baby to breathe since they relax the smooth muscles that surround the breathing tubes. When the muscles relax, the breathing tubes open up more. These medicines are available as a syrup, a mist, or an inhaler. When given as a mist with a nebulizer, they work very quickly. The effects last for 4 to 6 hours. Inhalers used with a face mask or a spacer can also be a good way to give your baby this type of medicine. These medicines are:
Albuterol (Proventil®, Ventolin®),
Levabuterol (Xopenex®)
Ipatropium bromide (Atrovent®)
Terbutaline (Brethine®)
Albuterol and Ipratropium (Combivent®, Duoneb®)
The side effects can be
hyperactivity
muscle tremors or twitching
increased heart rate
irritability
Diuretics
Diuretics reduce the amount of fluid in your baby’s body by increasing the amount of salt (sodium) and water removed by the kidneys (more urine). When extra fluid is present in the lungs, it will be harder for your baby to breathe. There are many diuretics and each works at a certain site in the kidney. Most are given once or twice daily. Sometimes only one is used and sometimes more than one will be used. By using combinations, there may be fewer side effects.
Thiazide diuretics tend to decrease the body’s potassium. Potassium-rich foods are needed in the diet, and potassium supplements are often prescribed. The thiazides help the body retain calcium. Some of these are:
Hydrochlorothiazide (Hydrodiuril®)
Chlorothiazide (Diuril®)
Aldactazide (a combination therapy)
Loop Diuretics work well to remove excess fluid from the body. They tend to deplete the body of potassium and calcium. Most patients on this type of drug take extra potassium. Calcium-rich foods need to be added in the diet, and sometimes extra calcium may be required. Sometimes, a “calcium-sparing” diuretic such as the thiazides may be added.
Bumetanide (Burnex®)
Furosemide (Lasix®)
Spironolactone (Aldactone®) is a mild medicine that is often combined with the thiazides or loop diuretics because it can help the body retain potassium. Potassium supplements may be stopped when spironolactone is added so potassium levels do not rise too high. Some babies need potassium supplements even when using spironolactone if they are on high doses of other diuretics.
Histamine Blockers
These help to decrease the acid in the stomach and reduce irritation if the stomach contents are “refluxed” or forced back up through the tube that leads to the stomach (esophagus). Ranitidine is often given 2 to 3 times a day, often with meals. It can be a syrup or a tablet. If antacids have been prescribed, they should not be mixed with ranitidine. Instead they should be given 1 to 2 hours after the meal or feeding so they can be absorbed better.
Histamine blockers: cimetidine (Tagamet®) ranitidine (Zantac®), famotidine (Pepcid®)
Proton pump inhibitors: lansoprazole (Pravacid®), omeprazole (Prilosec®), pantoprazole (Protonix®)
Side effects may include
Headache
Tiredness
Trouble sleeping
Nausea, vomiting, or diarrhea
Metoclopramide (Reglan®)
This drug works to tighten the muscle ring that keeps the stomach contents from coming back up into the esophagus. It also speeds up the rate the stomach empties. It is given around 30 minutes before a meal or feeding.
Side effects may include
Drowsy
Dizzy
Restless
Rarely, twitching movements in the eyes arms legs or face. If these are noticed call your doctor.
Potassium Supplements
Potassium is an electrolyte found in the cells of the body. It is needed for many body functions, including muscle strength and the pumping of the heart. Potassium can be lost with the use of diuretics. To replace potassium, your baby can take potassium chloride which is a liquid. You may hear potassium, chloride referred to by the letters KCL which is its chemical symbol.
Palivizumab (Synagis®)
Synagis® is a medicine that is used to help prevent serious respiratory syncytial virus (RSV) infection. It is given by injection into the leg muscle every 28 to 30 days to provide antibodies against RSV. It is given from November through April for babies who are at risk.
Always keep your doctors informed about all medicines your baby is taking. Some medicines can interfere with others.
Problems Sometimes Associated with BPD
Congestive Heart Failure
When the lungs and heart become filled with more fluid than they can handle, the heart has trouble keeping up with its work. Babies with BPD may have heart failure if they receive too much salt or too little oxygen, or as the result of significant lung infections. This is called congestive heart failure or CHF. Watching salt intake and using diuretic medicines will help avoid this problem. Babies starting to get CHF should be seen by their doctor right away. Signs of CHF:
Puffiness, especially around the eyes
More trouble breathing
Poor (gray or bluish) skin and lip color
High Blood Pressure
Some babies with BPD have high blood pressure. Your baby’s blood pressure should be checked from time to time. High blood pressure can be controlled with proper medicines.
Gastroesophageal Reflux (GER)
Babies who have problem with vomiting or reflux should be treated. This may include small frequent feedings and thickening feedings with cereal. Place the baby with his head up most or all of the time, and give antacids or special medicines. There are many reasons why you need to control vomiting and reflux. If your baby vomits a lot, he may lose a lot of needed calories and not grow well. Acid in the throat may cause bronchospasm. This can cause wheezing, hoarseness, or noisy breathing. Food may also be sucked into the lungs and cause pneumonia.
Developmental Delay
Sometimes, there are developmental delays or other nervous system problems. These are not caused by BPD. Not all babies with BPD will have nervous system problems. Babies who are born very early often have other problems which may arise before, during, or after birth which may cause delays later. Further questions and concerns in the area should be addressed to your doctors. Most babies born early develop normally.
Common Questions and Answers
Q: Why did our baby get BPD? The baby next to ours was also on a ventilator, but he didn’t get BPD.
A: Babies, even of the same age and weight, may have varying degrees of premature lung disease or other lung problems and receive different ventilator and oxygen treatments and medicines. Also, babies are unique in how they respond to the same treatments. Some may get BPD, and others will not.
Q: Will our baby’s lungs ever be normal?
A: Your baby’s lung function will improve with growth. After age 5, lung function tests can tell how close to normal his lungs are.
Q: How long will our baby need extra oxygen?
A: This varies, so ask your doctor. After a while, he will not need extra oxygen.
Q: Will our baby be slow in school because he has BPD?
A: Some children who have BPD have extra learning needs, and others do fine. BPD by itself does not cause school problems.
Q: Is our baby more apt to get lung infections?
A: Your baby may not get more infections, but when a cold does occur, he may be sicker than other children.
Q: What is RSV?
A: RSV is respiratory syncytial virus. It is a common virus that causes the common cold. Most children have had it by the time they are two years old. Children with BPD can get much sicker than healthy children if they get RSV. It is most common in the fall and winter.
Q: Why is it so vital for our baby to gain weight?
A: New, healthy lung tissue depends on growth and weight gain.
Q: Why does he gain weight so slowly?
A: Babies with BPD use more calories breathing and may not eat as well as normal babies.
Q: Why is he such a fussy eater?
A: This may be just his way, or may be due to getting tired when feeding, or may be due to not being able to eat by mouth early in his life because of his illness.
Q: What can I do to make feedings more pleasant for him?
A: Be patient. Your health care team can give you many tips.
Q: What should we do if our baby gets a cold or has a fever?
A: A mild cold or fever can be handled as it would in any child. For more severe symptoms, your baby should see a doctor.
Q: Does he have to use the oxygen 24 hours a day?
A: Yes, at first for infants with more severe BPD. Some babies only need extra oxygen during sleep or feedings, but your doctor will tell you if this is needed for your baby.
Q: When I went into the baby’s room this morning I found that the nasal cannula was not in place. Does it hurt him to be without oxygen for a short time?
A: Not usually for a short time.
Q: Does it hurt our baby to be on these medicines? Are there any side effects we should know about?
A: Many people take medicines for months or years without side effects. Your pharmacist, doctor, or nurse can tell you about side effects.
Q: How does the doctor know how much oxygen our baby needs?
A: By your baby’s condition and growth, and looking at oxygen levels, blood tests, and other exams.
Q: How is the oxygen level measured?
A: An oximeter (pulse ox) is a machine that uses a lighted probe on the finger or foot to measure the heart rate and the oxygen level in the blood. It measures oxygen saturation or the amount of oxygen that is dissolved in the blood. It is important to know if the levels are accurate.
Q: What do the oxygen saturation levels (O2 sats) mean?
A: The oxygen saturation level is measured as a percent of oxygen in the blood, so the highest amount is 100%. Parts of the body can be damaged by too much or not enough oxygen. Ask your doctor about what amount is good for your baby.
Q: Since we will be using oxygen in our house, can we still use the gas stove? The fireplace? The wood burning stove? Can people smoke? Can we burn candles?
A: Oxygen cannot be used near an open flame. Please ask for guidelines. Also, these other sources of smoke increase toxins in the air of your home, and may cause breathing problems for your baby.
Q: I heard someone say that if our baby didn’t get enough oxygen, he might get heart problems. How are they related?
A: Low oxygen levels in the lungs and blood cause blood vessels in the lungs to tighten and get smaller. This makes more work for the heart, and if severe, can cause heart failure
Q: Since our baby needs extra oxygen now, would he need more oxygen if he flew in an airplane or went high in the mountains?
A: Babies may need more oxygen on a plane or during travel in the mountains. If you are planning a trip, please ask your lung doctor for advice.
Q: Should my baby have the usual vaccines (baby shots)?
A: Yes, unless your baby has certain nervous system problems.
Q: Should my baby have a flu shot?
A: It is a good idea for babies over 6 months of age who have BPD. It is also a good idea for siblings, parents, and others who care for your child.
Q: Will tobacco smoke hurt my baby?
A: Yes, no one should smoke in the home or in the car of a baby with BPD.
Q: What will happen if my baby gets a cold?
A: He will tend to be sicker and be sick longer than a baby without BPD. Your baby should be seen by a doctor if he has a chronic cough, fever or more trouble breathing.
Q: What if I forget to give a medicine?
A: The answer depends on which one it is. Please ask your doctor or nurse for advice.
Q: What if I feel angry or depressed?
A: Some feelings like this are normal. If you keep feeling this way, please let us know. There are many people trained to help parents with babies who have chronic illnesses.
BPD Glossary
Alveoli: The tiny air sacs in the lungs where carbon dioxide and oxygen are exchanged
Apnea: Not breathing. All people have some pauses in breathing. Apnea longer than 20 seconds is usually abnormal.
Bronchi: The bronchial tubes or airway tubes which carry air into and out of the lungs.
Bronchioles: Small bronchi; the smaller airways of the lungs.
Bronchopulmonary Dysplasia: A lung disease sometimes found in babies who have needed a ventilator and extra oxygen after birth. This is also called BPD. Most babies with BPD are small, born early, and have respiratory distress syndrome (RDS).
Calcium: An important body salt. It is needed for muscle function and forming bones.
Carbon Dioxide: A waste gas made in our bodies. The lungs must get rid of it. Babies with BPD may have trouble getting rid of it and have higher levels in their bodies. Carbon dioxide is sometimes referred to by the letters CO2.
Chest Wall: The ribs, breastbone, spine and the attached muscles.
Chronic: Long lasting; frequently recurring.
Cilia: Tiny hair-like structures on cells lining the respiratory tract. They help move mucus out of the lungs.
Continuous Positive Airway Pressure : A steady pressure given through an endotracheal tube, or nasal prongs. It helps keep the lungs expanded. This is also called “CPAP” pronounced c-pap.
Cyanosis: The blue color of the skin, seen in babies with very low oxygen levels in the blood.
Diaphragm: A wall of muscles and tendons between the lungs and the organs in the abdomen (belly). The diaphragm is the main muscle of breathing.
Diuretics: Medicines to help the body get rid of extra water and salt. These are sometimes called water pills.
Electrolytes: Salts in the body including sodium, potassium, calcium, magnesium, chloride, and phosphate.
Endotracheal Tube: A pliable, plastic tube passed through the mouth or nose, through the throat and into the windpipe. Breaths from a ventilator are given through this.
Esophagus: The swallowing tube. It carries food from the mouth to the stomach.
Gastroesophageal Reflux: When the contents of the stomach back up into the esophagus.
Grunting: A grunt is heard when the baby begins to breathe in or exhale. It is heard in sick babies, and is a sign of breathing trouble.
Nasal Flaring: The nostrils widen when a baby breathes in. A sign of breathing distress.
Neonatal: Newborn
Oxygen: A gas with no color or odor that makes up 21% or about one fifth of normal air. We all need this to survive. Babies with BPD often need extra oxygen. Oxygen is written as O2.
Potassium: A vital body salt. It is needed for proper muscle functions and heart rhythm.
Pulmonary: Refers to the lungs.
Respiratory: Refers to breathing.
Respiratory Distress Syndrome: A lung disease seen in some infants born early. These babies need help breathing. A ventilator and extra oxygen are often part of the treatment. This is called RDS for short.
Retractions: Pulling in between the ribs or at the top or bottom of the breastbone seen when a baby is breathing hard. This is a sign of breathing distress.
Sodium: An important body salt. Table salt is sodium chloride.
Surfactant: A fatty, soapy substance made in the lungs. It helps the air sacs in the lung stay blown up like small balloons. Babies without enough of this have respiratory distress syndrome (RDS).
Tachypnea: Fast breathing.
Trachea: The windpipe. The trachea is the largest of the bronchi.
Ventilator: A breathing machine that helps your baby by giving him breaths and extra oxygen. This is also called a respirator.
Wheezing: A musical, whistling sound that may be heard when a baby breathes out. This sound means your baby’s airways are tighter than they should be.
