What an Accomplishment!
You have finally been told your child will be leaving the hospital. Bringing home a CDH baby is a huge accomplishment. This is an amazing hurdle for your baby, you and the hospital staff that have been there through this all.
This is met with mixed emotions for parents. You might fear having to now take care of this child who was in such fragile health. There were times you thought this day would never come. At the hospital, you always had the nurses and doctors to oversee the care, help when you needed it, but now you will be in total charge of your baby’s care. Be confident that you are the parent and parental instincts are 99.9% of the time absolutely in sync with your child. Get phone numbers of key personnel you may need to contact, not just for follow-up care but for general questions too.
If your child will require oxygen at home, you will need to contact a local medical health care supplier for this. Also, obtain a portable oxygen tank for not just doctor’s appointments but in case the electric power goes out. This is also important – contact your local electric power supplier and tell them a young child that is oxygen dependent will be in the household. This way – they know this and can get help to you when the power is out.
If your child requires tube feeding, you will also need a medical supplier for the tubing and other supplies. Usually health insurance covers these services and supplies. Also, you can use the Breath of Hope Listserv; many parents might have practical information on supplies, companies and might also have solutions to some of the issues that might come up. It is also less expensive for a child to be at home on any sort of medical assistance, than to be hospitalized. Some children will be transitioned from the hospital to a nursing care facility to transition home; this is still a step in the right direction.
Medications also may be a factor; try to have one pharmacy supply all medications. You will only have one place to go to pick up the medications and will not have to travel to several different locations. Also, one pharmacy can better track potential interactions with other drugs.
Overwhelmed? There is so much to remember from medications to what to “watch for”. Your child should have follow-up care and physical and/or occupational therapy. Even after a short stay in a NICU or PICU, there may be slight delays or some aversions. Parents need to also know that they each need a break and time to themselves and with one another through this period. The NICU experience is like going through battle, and we are all shell shocked from the experience. Be kind to one another. Taking care of any baby is hard, but a baby who has survived congenital diaphragmatic hernia – can be especially challenging. They have even more accessories much of the time. Do not be afraid to ask for help and accept help. It is not a sign of weakness but a sign of strength to know when you need help. Also know that in time, you will return the favor to those that do help in return. Many believe just you sharing your beautiful child with them is payment enough!
When your child is about to be released, parents are required to learn CPR, how to use any equipment the child may come home using, and undergo various other trainings depending upon your child’s needs. Ask questions and don’t be afraid to practice over and over again until you feel comfortable. Remember, the hospital obviously has confidence in your abilities or they wouldn’t schedule your child’s release!
The most common issue these babies may have is gastresophageal reflux/foregut dysmotility – it is reported to occur in 45% to 90% of infants with CDH. Reflux can be treated with medications, and many parents also use some sort of angle bed – raised head after and during the feeds. As these babies grow, they can outgrow reflux. But, if it becomes severe, a surgical procedure called fundolopation may be necessary. This is being done less today than ten years ago due to the advancement of medications.
A high percentage of these children are underweight in one clinical study over 50% of CDH infants weighed below the 25th percentile. The most important thing for these babies is to have the nutrition they need for growth – they may need NG Tubes or Gtubes for feeding. Please do not take this personally; we all want oral feeding to happen, but you must remember that it is most important that they grow and thrive as much as possible. Eating could be a challenge. Fighting your infant to take a bottle or nurse to the point that it compromises their growth is not worth the stress. It is more important for your love and cuddling to be felt than for them to feed orally from their parent. If your child is a great oral feeder, that is wonderful. Growth helps these babies and their lungs. Always remember that reflux could cause your child to refuse to eat, too. At high school graduation, no one speaks of how much or how their child ate as an infant or a toddler.
Upper gastrointestinal study, pH probe and/or gastric scintiscan should be considered for all CDH Infants before discharge and at 1-3 months after birth if symptoms, 4-6 months after birth if symptoms, at 9-12 months after birth to be considered for all patients, 15-18 months if symptoms, and annually through age 16 if symptoms.
Esophagoscopy should be considered if there are symptoms at 1-3 months after birth, 4-6 months after birth, at 9-12 months after birth if symptoms or if there are abnormal gastrointestinal evaluations, at 15-18 months after birth, and annually through 16 years if symptoms.
Oral Feeding Evaluations should occur before discharge, 1-3 months after birth, 4-6 months after birth, 9-12 months after birth, 15-18 months after birth, and annually until age five.
Feeding and Growth*
There is no shortage of information on the internet offering advice for children with feeding difficulties. It is important to realize that CDH children have unique feeding and growth issues, and parents should only seek advice from a healthcare team experienced with CDH care. A CDH team should consist of a physician, nurse, registered dietitian, feeding therapist/occupational therapist, and social worker.
Children with CDH have much higher energy and protein needs than healthy children. This is for many reasons including supporting the still-growing lung, work of breathing, and surgical healing. If you have had other children, you will quickly realize that your child with CDH requires more breastmilk, formula, or food than your previous children. In many cases CDH children require 120%-150% of what healthy children require. This often means higher calorie formulas are needed to supplement breastmilk (for infants) or cows milk (for older children). Your CDH team can help apply for insurance assistance if available, to cover the cost of this additional nutrition. It is important to always follow the feeding instructions provided at discharge or by your CDH team.
A very common feeding complication is gastresophageal reflux/gastric dysmotility – it is reported to occur in 45% to 90% of infants with CDH. Reflux can be treated with medications and altering feeding modalities, and in severe cases,a surgery called a fundoplication can be performed. An important thing to realize is that many CDH children can and will outgrow reflux. Once the abdominal musculature strengthens, many children who experienced severe retching and vomiting will suddenly stop. The key is for children to achieve normal growth that is the same as that of a healthy child. In order to achieve normal growth, over 50% of all CDH children requiring supplemental tube feedings.
Because of the high nutritional needs and common difficulties with reflux and vomiting, eating can be a challenge. Fighting your infant to take a bottle or nurse to the point that it compromises their growth is extremely stressful, and even very young children can sense this stress and in turn, can actually worsen their difficulty with feeding. It is more important for your love and cuddling to be felt than for them to feed orally from their parent. We understand that this is stressful and want all families to achieve the endpoint of normal eating by mouth. However in many cases, the way to eventually achieve this in the long run, is to rely on tube feedings in the meantime. Do not view this as a failure but instead as a road to growth and strength that will lead to eventual feeding success. Tube feedings can be given by nasogastric tubes, a tube routed through the nose down into the belly, or by gastrostomy tubes, a tube inserted directly into the stomach through the skin. Both tubes are temporary and can be removed easily when no longer needed. Nasogastric tubes are not recommended for older infants or children due to the ease of removal or dislodgement during play or activity. If a child still requires tube feedings as an older infant, a gastrostomy tube should be scheduled. Tube feedings can be administered many ways, and various administrations should be trialed until you find what works best for your family and your CDH child. Many children eat normally by mouth during the day, and receive tube feedings only at night, given by slow drip by a feeding pump. Other children will eat what they can orally every few hours, then receive the remainder by syringe feeding after each oral feeding. Either method can work depending on you and your child’s needs. Many children with severe reflux benefit from feedings that are run at a lower rate over more hours. While this is not a “normal” way for a child to receive nutrition, if this is the best way to control your child’s reflux and vomiting, this method should be considered to avoid worsening the child’s fears of eating associated with excessive vomiting. Registered dietitians should be involved in serial nutrition and growth evaluations for your child across the life cycle. Again, remember that a child with CDH should growth just like a healthy child, so keep track of your child’s growth as it compares to national percentiles.
Oral Aversion/Feeding Clinics
Oral feeding evaluations performed by a licensed occupational therapist should occur before initial hospital discharge, within 3 months after birth, and again at ages 6 months, 12 months, and annually until age five or eating and growth issues have resolved. Talk to your CDH team if you are interested in pursuing outpatient feeding therapy. Available resources vary greatly from state to state, but there are many great programs nationwide.
Hearing Loss can be a concern and should be evaluated in these infants who survive CDH. It can occur even if they were not treated with ECMO. The cause remains for the most part unknown. It could be several factors including the treatment for respiratory failure and/or combination of medications they may have taken. Almost half of these infants may have some degree of hearing loss. They should be evaluated before discharge and every six months to age three, then annually to age five. Early discovery of any hearing loss will allow early intervention which will help their development.
Developmental Screening Evaluations should occur before discharge, then 1-3 months after birth, 4-6 after birth, 9-12 months after birth, 15-18 months after birth, and then annually to age 5 depending upon their assessments.
Pulmonary function testing should be at 4-6 months after birth if indicated, 15-18 months after birth if indicated, and annually through age 16.
RSV prophylaxis immunizations should be done prior to discharge throughout RSV season during the first 2 years after birth (if evidence of chronic lung disease).
During cold, flu and RSV season, many parents isolate their CDH babies and young children from the general public as well as anyone who may have a virus, cold, or bacterial infection. Hand sanitizer will become a staple in your household. Others may be critical of you as a parent because you will appear to be overly cautious about your child’s exposure to any cold symptom. But, parents of these children will tell you it is better to be overly cautious and appear rude to some than to rush your child to the hospital ER in respiratory distress. A simple cold in CDH babies and young children may develop into pneumonia. Their lungs are already fragile. For a baby without CDH, pneumonia is serious, but for a CDH baby, it can be deadly.
Scoliosis and chest wall deformity screening (physical exam, chest radiograph, and/or computed tomography of the chest) should be in follow-up care at 9-12 months after birth (or sooner if you notice something abnormal) and annually to age 16. When the diaphragm forms in development, so does the spine. It is believed that scoliosis may occur in approximately 17-27% of CDH survivors. It is important to follow up with their care and early intervention is best.
National Scholiosis Foundation http://www.scoliosis.org/
Most parents of CDH infants and children fear reherniation, and it has been reported in 8% to 50% of patients with CDH. One predictor is a large defect that requires a patch to repair. If your infant or young child has increased reflux activity, decreased feeding, increased gagging, or you hear crackling noise in their chest as they breathe – take them to the doctor. These are just a few symptoms that have been reported prior to diagnosis of recurrent diaphragmatic hernias. Monitor and record any changes to relay to the doctor(s).and if you truly feel something is not right, insist upon x-rays for your peace of mind. Occasionally there are children who have no symptoms who will require surgery for a recurrent diaphragmatic hernia. The lifetime risk of recurrence is not known. There are many children who have never had an incident, but it best to be overly prepared with information.
Bowel obstructions or adhesions are also something that happen in these children and usually are rapidly symptomatic. The explanation of this is that their intestines are usually herniated. When the initial repair is done, they are pushed back to the lower thorax. In this process and through growth, sometimes problems occur. Be aware of any intense pain your child might have in their stomach area. If accompanied with fever, no bowel movement, or blood in the stool, immediately get them medical attention.
Pectus excavatum sunken appearance of the sternum can be prevalent in CDH children. Most of the time it is more cosmetic but in some cases the heart is displaced. The Mital valve prolapse could be present and there is a decrease in lung capacity. Surgery might be recommended.
Postdischarge Follow-up from the American Academy of Pediatrics http://pediatrics.aappublications.org/content/121/3/627.full.pdf – a good general guide for doctors, nurses and parents. Information on Feeding and Growth provided by Carrie McFarland, RD,CNSC, Senior Clinical Dietitian, Pediatric Continuing Education Coordinator, UCSF MedicalCenter/Children’s Hospital. Please remember, all of these children are different, no two have the same exact issues or circumstances. Your best resources are your child’s doctors and health care professionals.
To make Tube Feeding more fun – Belly Buttons & Tube Pads *Note the creator of these is a full time Mom and an RN have patience with any order you send! Thank you!