Palliative care for premature babies: Managing your baby's carePPalliative care for premature babies: Managing your baby's carePalliative care for premature babies: Managing your baby's careEnglishOtherPremature;Newborn (0-28 days);Baby (1-12 months)NANASupport, services and resourcesPrenatal Adult (19+)NA2009-10-31T04:00:00ZChristine Newman, MD, FRCPC Lori A. Ives-Baine, RN, BScN9.0000000000000056.00000000000001442.00000000000Flat ContentHealth A-Z<p>Learn about health care teams that work hard to manage any symptoms babies experience. They focus on relieving pain and ease breathing difficulties. </p><p>During palliative care, a team of health-care professionals will work hard to manage and relieve any symptoms your baby experiences. They will also answer questions you may have and provide support.</p><h2>Key points</h2> <ul><li>A team of health-care professionals will work hard to relieve any symptoms your baby is experiencing including pain and difficulty breathing.</li> <li>The palliative care team will provide support to you while your baby is in their care as well as after.</li></ul>
Gestion des soins palliatifs de votre bébéGGestion des soins palliatifs de votre bébéPalliative care for premature babies: Managing your baby's careFrenchOtherPremature;Newborn (0-28 days);Baby (1-12 months)NANASupport, services and resourcesPrenatal Adult (19+)NA2009-10-31T04:00:00ZChristine Newman, MD, FRCPC Lori A. Ives-Baine, RN, BScN9.0000000000000056.00000000000001442.00000000000Flat ContentHealth A-Z<p>Renseignez-vous sur les soins de santé qui travaillent fort pour la gestion de tous les symptômes que les bébés peuvent avoir. Ils sont centrés sur le soulagement de la douleur et l’aide aux troubles respiratoires.</p><p>Pendant les soins palliatifs, l’équipe de soins de santé de votre bébé travaillera très fort afin de gérer tous ses symptômes. Ils répondront également à vos questions et vous donneront le soutien nécessaire. </p><h2>À retenir</h2> <ul><li>L’équipe de soins de santé de votre bébé travaillera très fort pour gérer tous ses symptômes, dont la douleur et les troubles respiratoires.</li> <li>L’équipe des soins palliatifs vous offrira le support nécessaire pendant qu’ils s’occupent de votre bébé et également par la suite.</li></ul>

 

 

Palliative care for premature babies: Managing your baby's care1856.00000000000Palliative care for premature babies: Managing your baby's carePalliative care for premature babies: Managing your baby's carePEnglishOtherPremature;Newborn (0-28 days);Baby (1-12 months)NANASupport, services and resourcesPrenatal Adult (19+)NA2009-10-31T04:00:00ZChristine Newman, MD, FRCPC Lori A. Ives-Baine, RN, BScN9.0000000000000056.00000000000001442.00000000000Flat ContentHealth A-Z<p>Learn about health care teams that work hard to manage any symptoms babies experience. They focus on relieving pain and ease breathing difficulties. </p><p>During palliative care, a team of health-care professionals will work hard to manage and relieve any symptoms your baby experiences. They will also answer questions you may have and provide support.</p><h2>Key points</h2> <ul><li>A team of health-care professionals will work hard to relieve any symptoms your baby is experiencing including pain and difficulty breathing.</li> <li>The palliative care team will provide support to you while your baby is in their care as well as after.</li></ul><figure> <img alt="Mom and dad with sleeping baby" src="https://assets.aboutkidshealth.ca/akhassets/LIB_bereavementpic_14_EN.jpg" /> </figure> <h2>How will your baby’s symptoms be managed?</h2><p>Your baby’s health care team will work very hard to manage any symptoms that your baby is experiencing. Two symptoms that parents are often most concerned about are pain and difficulty breathing. Both of these symptoms can be minimized or completely eliminated through the use of medications or non-pharmacological means such as cuddling, swaddling, gentle touching, massage or music therapy.</p><p>Speak to your baby’s nurse about things you have noticed that make your baby comfortable. Together you can develop a plan to handle the symptoms. Don’t hesitate to let the nurse know if you feel that your baby is in pain or you can't make them comfortable.</p><h2>How long will the dying process take?</h2><p>The doctor may be able to give you a rough idea of how long it will be before your baby dies. It's not an exact science, though, so it may happen more quickly or slowly than you are expecting.</p><h2>What will death look like?</h2><p>If you have never seen someone die, you may well imagine it to be a scary, traumatic event to watch. Generally however, death is very peaceful. Ask your baby’s doctor to talk to you about what your baby’s death is likely to look like. The doctor can prepare you for how your baby may look, and for any things that you should be watching for. Ask any questions you might have, even those you think you should know the answer to already. Having as much information as possible in advance really will help to make the death less mysterious and terrifying.</p><h2>What are the physical signs that death is imminent?</h2><h3>Coolness</h3><p>Your baby’s hands, arms, feet, and then legs may be increasingly cool to the touch. At the same time, the colour of the skin may change. The underside of the body may become darker and the skin mottled. This is a normal indication that the circulation of blood is decreasing to the body’s extremities while being reserved for the most vital organs. It is okay to try to keep your baby warm with a blanket. Research with dying adults, however, tells us that while the coolness of their extremities is not bothersome, the weight of too many clothes and extra blankets is painful, so be careful not to use too many blankets. Achieving a normal body temperature is not the goal, comfort is.</p><h3>Restlessness</h3><p>Your baby may become more restless and irritable, and harder to settle. This is a common occurrence that is due in part to the decrease in oxygen circulation to the brain and to changes in metabolism. To have a calming affect, speak in a quiet, natural way, lightly massage the forehead, read to the baby, or play some soothing music. If the irritability continues, speak to your baby’s nurse about using medication to allow your baby to rest.</p><h3>Changes in breathing patterns</h3><p>The baby’s regular breathing pattern may change. One pattern, called Cheyne-Stokes breathing, consists of breathing irregularly: shallow breaths with periods of no breathing of five to 30 seconds and up to a full minute, followed by periods of rapid, shallow pant-like breathing. These patterns are very common and indicate a decrease in circulation in the internal organs. Elevating the head or turning the baby on their side may bring comfort.</p><h2>What are the non-physical signs that death is imminent?</h2><h3>Withdrawal</h3><p>Your baby may seem unresponsive or comatose. Because hearing can remain until the end, speak to your baby in a normal tone of voice, hold their hand, and say whatever is in your heart.</p><h2>How will you know when your baby has died?</h2><p>When your baby dies, they will no longer respond to touch or sound. There will be no signs of breathing, and you will not be able to feel a pulse. If you are alone with your baby, do not be afraid. Call for your baby’s nurse, who will notify the doctor. The doctor will come and examine your baby to make the official pronouncement of death.</p><h2>What happens after the death?</h2><p>Nothing needs to happen right away. The baby does not have to be moved until you and your family are ready. You should take as much time as you need to say good-bye to your baby before their body is taken away. Your baby’s doctor will need to talk to you about things like autopsy and organ/tissue donation if you haven’t already done so. You will also need to make plans for your baby’s funeral. The NICU staff can help you with this. There is also more on funeral planning later on in this section.</p><h2>What do you tell people after it happens?</h2><p>You don't need to provide lots of detail. Be brief. Have someone activate a phone tree to alert people who need to know your baby has died and what the funeral arrangements are.</p><h2>About autopsy</h2><p>Autopsy is generally appropriate when there is a chance that something about the cause of death, or the underlying illness, may be uncovered. In this case, parents must give their consent in order for the autopsy to be performed.</p><p>In the case of an unexpected or unexplained death, your baby’s doctor will need to notify the Office of the Coroner. After reviewing the case, the coroner may order an autopsy, for which your consent is not needed.</p><p>An autopsy is an examination of a patient performed after their death. It includes a detailed external examination of the baby and possible incision with removal of organs or tissues for examination under the microscope. It is done as a sterile procedure, like any surgery, with great respect for the baby. Incisions are made in a way that will not interfere with a public viewing of the body at the funeral, should that be your wish. Photographs and X-rays may also be part of the autopsy. Your baby’s doctor will discuss the need for an autopsy in your situation.</p><h2>About organ/tissue donation</h2><p>Organ and tissue donation is a wonderful gift that can save a person's life or improve its quality. Transplantation has become a very successful treatment for people with organ or tissue failure, thanks to advances in surgery.</p><p>In the case of a premature baby, the discussion would generally be limited to donation of tissue such as corneas from the eyes, or heart valves. This would be because of the baby’s size, general health, and because organs can only be taken from patients who are declared ”brain dead,” which is something not done in premature babies.</p><p>While it can be difficult to discuss this issue, it is very worthwhile. Many families who have decided to donate their baby's tissues take comfort in the action because they feel that some good has come out of their baby’s short life. If there are religious issues, it's helpful to speak to a religious official. Most major religions support organ and tissue donation.</p><p>If a baby dies, and the decision has been made beforehand as to whether donation is an acceptable option, next of kin give consent through a formal consent process. Tests are then done to ensure certain criteria are met. Families are well supported at this time. Someone from the hospital's organ and tissue donation team is available to answer questions and other experts including nurses, doctors, chaplains, and social workers, provide support.</p><p>The process of removing the organs or tissue is carried out with complete respect and dignity. It is a sterileprocedure like any other, carried out by a surgeon with the support of nurses. It will not cause any disfigurement should a parent want an open casket at the baby's funeral. No one will be able to tell that the baby was an organ or tissue donor. Organ or tissue donation also won't delay funeral arrangements and there is no cost to the family for donation.</p><p>After the tissue or organ has been donated, some basic information is provided to the parents of the donor about the recipient, although the baby is not identified by name or hospital. Knowing that their baby helped save the life of another sick baby can be very comforting. Many parents report that the organ donation was the one "bright light" to come out of their family tragedy.</p>https://assets.aboutkidshealth.ca/akhassets/LIB_bereavementpic_14_EN.jpgPalliative care for premature babies: Managing your baby's care

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