Children with CDH

The outcomes for children with Congenital Diaphragmatic Hernia (CDH) are varied and depend on factors such as the severity of their CDH. Most babies with CDH will meet their developmental milestones like other babies and children, but will require regular check-ups with their doctors.

 

It is very important that your baby is fully vaccinated with the current Australian Schedule. Your Doctor will likely also organise additional vaccinations against influenza and other viruses beyond the normal vaccination schedule.

Ongoing medical check ups 

 

From the time your baby is discharged from hospital and allowed to go home, you will need to work with your hospital and medical experts to ensure ongoing, regular health checks for your baby. At first, this may be weekly or monthly depending on your baby’s medical needs and health.

 

In the first two years of life, many babies will have hospital check ups every 3–6 months. After your baby is two, they will likely only require annual hospital check ups. If there are any issues or if you have any concerns, it is always best to consult your healthcare professional for next steps. Once your child is an adult (18 and over), they will no longer be seen at a Children’s hospital. It is important to communicate with your CDH child as they grow up, to make them aware of how they can best take care of their bodies and what signs to be conscious of, so that as adults they will feel confident looking after their health and knowing when to seek help.

Your child’s medical history

 

Keeping an accurate medical history record for your child is important to ensure your child gets appropriate ongoing care.

 

The beginning of your medical history records is your baby’s discharge summary, which you are given when you are discharged from the hospital, whether from the NICU or a ward. The discharge summary is important as it will let any doctor, nurse or allied health professional know what happened to your baby during their stay in hospital. A copy of the discharge summary may also be sent to your GP and it’s recommended that you bring a photocopy to your child health nurse on your first visit, so they too know what occurred in hospital. It’s recommended that you take a copy of your child’s medical history with you when you see a health professional who is not familiar with your child’s background.

 

It is also possible to obtain a copy of your child’s hospital records through Freedom of Information (FOI). Most hospitals will have a form you can complete to send to their records department. Call your hospital or search on their website for FOI details.

Some complications faced by CDH children  

 

  • Feeding issues and Gastro-oesophageal reflux disease (GORD)
    Some CDH children will face issues with reflux and vomiting after feeding. This can be due to a sensitive gag reflex after having a feeding tube for a period of time. This may require anti-reflux medications. Other babies may have some sensory issues around feeding due to the medical machinery and tubes they have had in their mouth and nose while in hospital.

 

  • Bowel obstructions
    Intestines do not particularly like being handled, which is often needed during CDH repair surgery. This is not common, but your child’s intestines may form scar tissue which could lead to a kinking of the bowel. A bowel obstruction can be very serious and may require surgery. Signs of a bowel obstruction are similar to those of a baby with a stomach bug – nausea, stomach ache or cramps, vomiting, constipation, and diarrhea. Any of these symptoms should be checked with medical professionals.

 

  • Re-herniation
    Rarely, a child’s diaphragm may re-herniate. This will require further surgery. Signs of re-herniation include your child feeling very sick, frequent vomiting or vomiting up green bile, a temperature, pain or lethargy. Sometimes there may be no signs at all to begin with. It is important to keep attending regular follow-up appointments with doctors and to seek medical assistance if your child has signs of re-herniation or of general sickness. The only way to confirm re-herniation is through an x-ray or scan.

 

  • Respiratory issues
    Due to their smaller and underdeveloped lungs, CDH children can face increased risk of asthma or may be at higher risk for respiratory infections such as RSV (Respitory Syncytial Virus) or chest infections. A baby’s lungs will continue to grow and strengthen in the first years of life after their CDH surgery, so this is when babies and young children are most at risk. As with many young children, it’s important to try and keep them safe by practicing regular hygiene, asking family and friends to not visit if they are unwell, and avoiding situations where your baby is more likely to pick up viruses.

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