If your child needs a heart transplant, you’re most likely feeling lots of feelings all at once– consisting of anger, unhappiness, concern, and frustration. These feelings can end up being frustrating, particularly when your child is waiting on a new heart.
Thankfully, lots of kids who undergo heart transplants go on to live normal, healthy lives once they recover from surgery. In the long term, they have to take medications to assist avoid complications and have regular checkups to inspect heart function.
During this challenging time, the best way to care for your child (and yourself) is to stay informed and communicate openly with your child’s doctor. When appropriate, talk with your child to make sure that he or she comprehends what is going on and is prepared for the obstacles ahead.
A heart transplant is recommended for children who have major heart dysfunction and will not be able to live without having the heart replaced. Some of the health problems that impact the heart in this way consist of complicated genetic (present at birth) heart disease and cardiomyopathy (disease of the heart muscle in which the heart loses its ability to pump blood effectively).
About Heart Transplants
A heart transplant is a surgery in which doctors get rid of an individual’s ill heart and change it with a healthy donor heart.
Transplants in children are done when a child’s heart does not work properly and he or she won’t survive without a new one. Medical professionals often refer to this condition as heart failure, or end-stage pediatric heart disease. They typically attempt to treat heart failure with medicine, surgery, or other procedures before suggesting a heart transplant.
When Is a Heart Transplant Needed?
A child’s heart may not work right for numerous factors. Sometimes, babies are born with heart problems (malformations) that cause their hearts to stop working. These defects are the primary reason for heart transplants in babies.
Certain types of heart disease, such as cardiomyopathy, also can cause heart failure. Cardiomyopathy happens when the heart muscle does not work well. As a result, the heart can not pump adequate blood to the body. Cardiomyopathy is the main reason that children and teens require heart transplants.
Some other (less common) reasons that children might need heart transplants include myocarditis, a swelling of the heart muscle, and irregular heart rhythms, referred to as arrhythmias or dysrhythmias.
Getting a Healthy Heart
Transplanted hearts originate from organ donors– adults and children who have concurred (or their guardians have concurred) to contribute their organs in case of an unforeseen death. They opt to contribute the organs due to the fact that they wish to help somebody else who is sick.
Getting ready for Surgery
If your child requires a heart transplant, your doctor will refer you to a transplant center, where you’ll fulfill the members of the transplant group. The team members, who collaborate to make sure that a child has a successful transplant, probably will consist of cosmetic surgeons, cardiologists (heart medical professionals), a transplant coordinator, nurses, nutritionists, psychologists, social employees, and other healthcare professionals.
The transplant group will evaluate your child to identify whether a transplant will be beneficial and whether your child is an excellent candidate for a transplant. The evaluation will consist of a medical history, a health examination, and some tests, such as blood tests to identify blood type.
The group most likely will perform several other diagnostic tests, which might include:
- an echocardiogram, a test where sound waves are used to produce an image of the heart
- an electrocardiogram (likewise called an ECG or EKG), a test that tapes the electrical activity of the heart and can help find arrhythmias and heart muscle damage
- heart catheterization, a procedure where a thin, plastic tube called a catheter is inserted into a blood vessel and then threaded through to the heart in order to get an inside peek at the heart and its chambers
If the medical professionals wish to take a look at the heart more closely, they will do a biopsy, eliminating a tiny piece of tissue from the heart to examine under a microscope.
The heart transplant evaluation lets the group find out as much about your child as possible. But it’s likewise a time for you and your child to find out about what will happen previously, during, and after the transplant. The transplant group is there to supply information and assistance, so make sure to inquire questions if you do not understand something.
Organ Waiting Lists
If the transplant group decides that a heart transplant is the right treatment, your child will be put on an organ waiting list. This list has the names of all of individuals who are waiting on hearts or other organs. Since April 2015, more than 4,000 Americans were on the waiting list for a heart transplant, consisting of over 300 children and teens.
A group called the United Network for Organ Sharing (UNOS) supervises this list and supervises of relatively identifying who gets the contributed organs. Organs are appointed based on how sick a person is and how quickly she or he requires a brand-new organ.
Organs projects likewise are based on which person on the waiting list is the best match for the organ contributed. That indicates that the organ is the right size for the individual’s body and the donor has the same blood type as the recipient.
Your child may need to wait to discover a heart that is a good match. Sadly, no one knows how long that wait will be. It could be just a couple of days or it could be years.
Waiting can be challenging, so think about looking for support from parents whose children have actually gone through or are awaiting transplants. Many neighborhoods have support system or you can ask your doctor or the healthcare facility social worker for suggestions, or search online.
Getting the Call
When an ideal heart becomes available, your household will be informed by phone or pager and you will need to go to the health center for the surgery right away. Because this might happen at any time, you must constantly be prepared.
When you get to the medical facility, the transplant group will prepare your child for surgery. They may run a couple of tests to guarantee that the new heart is a good match. Once the group decides that whatever is OKAY, your child will be moved to an operating space.
In the operating room, your child will be given anesthesia to sleep through the surgery and will not feel anything. The cosmetic surgeons will make an incision in the chest and eliminate the sick heart. They will link the new heart by sewing its capillary to the blood vessels in your child’s body. The new heart will then be placed in the chest. To enable the medical professionals to keep track of heart function, the cut may not be sealed right away.
A lot of heart transplant surgeries last in between 4 and 6 hours. Somebody on the transplant team will keep you notified about how the procedure is going while you wait.
Right after the surgery, your child will be relocated to the cardiac intensive care unit (CICU). You will be able to visit your child in the CICU for quick periods. Your child will get sedation and medicine for pain, and will stay asleep on the ventilator with a breathing tube in place until the doctors figure out that the brand-new heart is working well. This might take a few days.
The length of time your child will invest in the CICU will depend on his/her condition. Normally, the stay is 7 to 10 days. When all set, your child will be moved to the general cardiac ward. The transplant group will continue to care for and closely monitor your child.
Many children remain in the hospital a minimum of 3 to 4 weeks after surgery. During this time, kids and their households learn how to look after the brand-new hearts. Make sure you comprehend all of the doctors’ instructions since your child will need to follow them carefully.
When the transplant team agrees that your child is all set, he or she will be discharged from the health center. In the weeks that follow, though, your child will go back to the healthcare facility sometimes so that the doctors can continue to make sure that whatever is going well.
One of the most common problems after transplant surgery is rejection. Rejection is the body’s typical response to something foreign. Generally, this response is useful. For instance, it’s the way the body protects itself versus hazardous germs.
In the case of a heart transplant, rejection suggests that the body does not acknowledge the new heart and does not understand that it is valuable. As a result, the immune system attempts to attack it. Medicines (called immunosuppressants) help to control this response. In a sense, they trick the body into accepting the brand-new organ.
Although the risk of rejection is greatest in the first couple of weeks after transplant surgery, the body never completely accepts the brand-new heart therefore anti-rejection medications need to be taken for life. The transplant team will choose which medications are best for your child and these needs to be taken exactly as instructed.
Anti-rejection medications can cause some unwanted side effects, such as fever, headache, queasiness, exhaustion, and irritation. Be sure to report these and any other reactions to your doctor. Unfortunately, these medications likewise leave your child vulnerable to certain infections. This risk is biggest right after surgery, and other medicines will be provided to help reduce the risk. When possible, your child ought to prevent individuals who are sick to decrease the possibilities of getting an infection.
Usually, the quantity of immunosuppressants taken is gradually minimized as the body gets used to the brand-new organ and the risk of rejection declines. In rare cases, the body contradicts the brand-new organ and another heart transplant is required.
Living Heart Healthy for Life
Numerous kids who have heart transplants live typical, healthy lives once they recover from surgery. Some feel much better than they ever have in the past. Considering that nobody can anticipate for how long the brand-new heart will keep operating, your child will need to do everything possible to keep the heart healthy.
You can assist by ensuring that he or she takes all medications as directed. Doing so can be difficult, specifically initially and for more youthful kids. Likewise, view your child for signs of infection and rejection, consisting of fever, fatigue, trouble breathing, vomiting, weight gain, and poor cravings. Right away contact a doctor if these or any other problems take place. Likewise, motivate your child to get plenty of workout and eat well.
In the long term, regular examinations are needed to expect complications. In the beginning, these examinations will occur frequently (maybe weekly). Slowly, they’ll become less regular and eventually may be required just one or two times a year.
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