Medical conditions that can effect premature babies

Necrotising enterocolitis (NEC)

NEC is a serious condition that damages the inner lining of the bowel. Bacteria can pass from inside the bowel, through the damaged wall and into the surrounding tissue or bloodstream.  

We don’t fully understand why NEC develops but possible causes include an immature bowel, infection and damage to the blood vessels around the bowel. 

Breast milk helps to protect premature babies against NEC. Formula milk may increase the risk of NEC but this doesn’t mean that formula causes NEC. Some babies who are breastfed also get NEC. If your baby is too ill or too premature to breastfeed, they may be able to have expressed breast milk through a tube. 

Symptoms of NEC may include:

• a swollen stomach area (abdomen)
• blood in the stool or not passing stool
• green vomit
• being unusually quiet or agitated
• signs of infection, such as periods when breathing stops (apnoea), changes in heart rate and low blood pressure.

If your baby has NEC, they may need to stop having milk feeds to help the bowel to rest. They will be given intravenous feeds instead. Some babies may have antibiotics to treat any infection and some may need surgery to remove the affected section of bowel.

Colostomies and ileostomies

If your baby has necrotising enterocolitis or if the bowel is damaged, diseased or blocked, your baby may need a colostomy or ileostomy. 

A colostomy or ileostomy is formed when the bowel is attached to an opening in the wall of the abdomen, called a stoma or ostomy. Your baby’s poo passes out of the body through the stoma, leaving the damaged section of bowel to rest. A small bag fits over the stoma to collect the poo. 

If your baby has a colostomy, their large bowel (colon) will be used to form the stoma. An ileostomy is formed from the small bowel.

Once your baby has recovered, the team will talk to you about whether it is possible to close the stoma and reconnect the bowel. This may be done before or after they go home. If your baby is going home with a stoma, your healthcare team will show you how to look after your baby’s stoma. Find out more about going home with a colostomy or ileostomy. 

Intraventricular haemorrhage (IVH)

IVH is the name for bleeding in the fluid-filled cavities (ventricles) in the brain. Premature babies have a higher risk of IVH, especially if they were born before 32 weeks or weighed less than 1kg at birth. 

Some haemorrhages are very small and don’t cause any long-term problems. Others are large and can be life-threatening or contribute to later problems such as cerebral palsy, learning difficulties or seizures.  

There is no standard way of preventing or treating IVH but we know that the rates of IVH are lower in babies whose mothers had a course of steroids and magnesium sulphate during pregnancy.  The healthcare team will treat any symptoms your baby is having. They will also check that your baby’s brain is developing properly using ultrasound scans. 

Jaundice

Jaundice is common among newborns and almost all premature babies develop it. It is caused by a build-up of bilirubin in the blood. Bilirubin is produced when red blood cells break down. Newborn babies produce a lot of bilirubin, and their livers are not yet developed enough to remove it from the body.  If the levels become too high it can be serious, and although rare, it can sometimes lead to brain damage.

In paler-skinned babies, jaundice shows as yellow-coloured skin, while in babies with darker skins, the yellowing may show only in the whites of the eyes. 

If the healthcare team think your baby may have jaundice, they will do a blood test to measure the amount of bilirubin. 

Mild jaundice may not need treatment and may get better on its own. Some babies need treatment with phototherapy. This involves laying them under a special blue light (with their eyes protected) or on a fibre-optic blanket that gives out light at the correct wavelength. 

Occasionally, jaundice can be a sign of a more serious illness. If the level of bilirubin is very high, your baby may need a blood transfusion. 

Anaemia

If your baby has anaemia, they have a reduced number of red blood cells. Anaemia is common in premature babies because they have fewer red blood cells than full-term babies and their bodies break the blood cells down faster. Babies in the baby unit also have a lot of blood tests, which lowers the number of red blood cells. If you have a different blood type to your baby, this can also cause your baby to break down red blood cells quickly. 

Symptoms of anaemia may include: 

• pale skin, especially inside the mouth or around the inner eye (this may be harder to detect in babies with dark complexions)
• poor feeding
• sleepiness
• slow weight gain
• fast breathing and heart rate or increased episodes of apnoea and bradycardia.

The healthcare team will carry out tests to find the cause of your baby’s anaemia. Most cases of anaemia can be treated with good nutrition and iron supplements. Some babies, especially if they were born very early, may need a blood transfusion. 

Cerebral palsy

Cerebral palsy is a group of conditions that mainly affects learning, movement and co-ordination. It is more common in children born prematurely, with those born earliest at the highest risk. 

Cerebral palsy affects how the brain sends messages to other parts of the body. It affects everyone differently with symptoms ranging from mild to severe. Symptoms may include problems with balance, posture, talking, chewing or learning.

Babies may show early signs of cerebral palsy, such as: 

• fidgety movements
• floppiness or stiffness
• delays in development, for example, not sitting by 8 months or not walking by 18 months
• feeding problems.

The symptoms may not be obvious at first, but most children are diagnosed by the age of 2.  

If your baby has cerebral palsy, they will have regular check-ups to monitor their symptoms, which may change as they grow up. Treatment may include physiotherapy, occupational therapy, speech therapy or diet therapy. Medicines can help with stiff muscles and some children may have surgery. 

The NHS website has more information about cerebral palsy. You can also contact SCOPE for support and information.

Looking after your mental health

It can be a very stressful and upsetting time if your newborn is poorly. It may help if you can understand more about what’s happening, so ask the healthcare team any questions you need to. Stress and anxiety can cause confusion and poor memory, so don’t be afraid to ask them to repeat anything you need to. 

You can also talk to a Tommy’s midwife free of charge from 9am–5pm, Monday to Friday on 0800 0147 800 or email them at [email protected]. 

Find out more about coping with a premature birth.