Now Felix is at home I have had some time to update his medical information page and to try and explain in simple terms what most of his medical conditions are. Whilst updating this list I noticed a link between most of his conditions, something which I hadn’t spotted before. Whilst Felix was in hospital I kept the research to a bare minimum. Google has a wonderful way of show casing worst case scenarios.
Here is an overview of Felix’s Medical history.
Click on each condition to scroll to the relevant section, or carry on reading. I have also put references at the bottom of the page for further reading.
• Born prematurely at 29 weeks gestation. (11 weeks early)
• Respiratory Distress Syndrome (RDS)
• PDA (Patent Ductus Arteriosus)
• Pulmonary Haemorrhage
• Intra-ventricular Haemorrhage (IVH)
• Seizures
• Infection –Staphylococcus
• Chronic Lung Disease (CLD) / Broncho-Pulmonary Dysplasia (BPD)
• Jaundice
Respiratory Distress Syndrome
Respiratory Distress Syndrome often develops when the baby’s lungs are not big enough to support the body, or when there is insufficient surfactant. Surfactant is a substance that coats the alveoli, or air-sacks, inside the lungs. Without sufficient surfactant it makes it much harder for baby’s to expand their lungs. One symptom of RDS can be a retraction of skin and muscles below the baby’s ribs. This is due to the extra work required to draw air into their lungs.The picture below shows Felix’s retracted chest when he was two weeks old.
Patent Ductus Arteriosus
Patent Ductus Arteriosus is very common in premature babies. When babies are developing in the womb there is a duct linking two of the big blood vessels leaving the heart and connects to the lungs. When a baby is born this duct should close shortly after birth. In some premature babies this doesn’t happen and the duct is left open (patent), resulting in the lungs having too much blood to cope with. This could lead to further complications such as fluid building in the lungs. Treatment for PDA is often ibuprofen which helps the duct to close.In Felix’s case his PDA was confirmed after the doctor listened to a murmur and an X-ray of his heart. After a course of medicine this closed enough not to not warrant too much concern. His PDA is likely to be the cause of his Pulmonary Hemorrhage.
Pulmonary Haemorrhage
Pulmonary Haemorrhage is where there is a large amount of bleeding into the lungs. Babies are at a risk if they were born prematurely, had RDS, were ventilated or had a PDA. There are also other risk factors including development within the womb. “The underlining cause of pulmonary haemorrhages is thought to be a rapid increase in pulmonary blood flow due to a patent ductus arteriosus.” (www2.cochrane.org)Felix had all the above and suffered from a pulmonary haemorrhage on the second day of his life. The Pulmonary Haemorrhage was closely linked to his Intra-ventricular haemorrhage.
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| Ventilated on Day 2 |
Intra-ventricular Haemorrhage
An Intra-ventricular Haemorrhage (IVH)is where there is a level of bleeding inside the brain. IVH in varying degrees is common among pre-term babies and if it wasn’t for routine brain scans there would be little chance of these being noticed. IVH can occur in premature babies due to the shock of the birth. The capillaries are overloaded with blood and oxygen which can cause them to leak blood. Other risks are related to complications with the lungs such as pulmonary haemorrhages or damaged by ventilation machines whilst the child is so fragile. There are four grades of IVH. Grade 4 is the most severe and this is when the blood bleeds within the tissue of the brain (haemorrhagic parenchymal infarcation). The brain cells under this blood are eventually starved from oxygen and die, leaving a space or cyst behind. The brains ventricles can also become enlarged due to a fluid build up which can lead to complications such as hydrocephalus. A child with an IVH may develop movement and muscle problems and can take longer to reach their developmental milestones. Significant movement or posture problems may be diagnosed later in the child’s life as Cerebal Palsy.Felix suffered a Grade 4 bleed on the right side of his brain and a Grade 2 on his left. It is believed that these happened at the same time as the Pulmonary Haemorrhage. The immediate effects were upper body seizures. He has had numerous brain scans to monitor the development of the bleed. There is significant tissue damage on the right side of his brain and the ventricles are enlarged on both sides. At time of writing the doctors are confident that the bleeding has settled down and in some cases has marginally improved. It is impossible to say the outcome of his IVH but he will be monitored throughout his early years.
Seizures
Seizures are often triggered by an IVH or serious infection. They occur after abnormal electrical discharges in the brain. Common seizures are jerking movements, arm stiffening or flickering movements. Many babies who experience seizures have them briefly and mildly whilst some are more prominent and persistent. Anticonvulsant medicine is often given to patients to relieve the symptoms.Felix’s seizures at first were fairly frequent. His left arm would straighten and move erratically, after being on medication for a few days these seizures settled down and disappeared. A few weeks later after a significant infection the doctors were concerned about potentially more seizures involving brief and erratic upper body movements. These again, if they ever were seizures, settled down and have now ceased.
Infections
Infections are very common amongst premature babies due to their immune systems not being fully developed. Also, due to the nature of Intensive Care, there are lots of situations where babies’ skin is breached to allow life-saving intervention, including intravenous lines and injections. As it is very difficult to have a 100% sterile environment infections are often carried by doctors, parents or visitors. Infections in babies often become quickly septic. Septicaemia is where the infection circulates the blood and can lead to severe complications if not treated quickly enough. Certain infections are obviously more dangerous than others, but are mostly treated by antibiotics.When Felix was having his long intravenous line put into his arm he picked up a bad infection. It was first noticed when his breathing slowed down and started having frequent apnoeas. His blood/gas level was extremely low and as a result he was immediately re-ventilated. One of the markers for measuring infection is the C-reactive Protein (CRP). In a healthy baby this should be <10, Felix’s reached 189. His bloods cultivated a Staphylococcus virus and it took over two weeks before he had got over his infection.
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| Felix with his infectious intravenal line |
Chronic Lung Disease
Chronic Lung Disease (CLD) or Broncho-Pulmonary Dysplasia (BPD) is often a result of having to use the ventilator whilst very young as this can damage delicate tissues. Also, should a baby require oxygen for over 28 days they are often classed as having CLD.Felix is now at home with Oxygen. His O2 requirements are very minimal but due to being ventilated at birth and re-ventilated after his infection he needs time to build up his strength and repair damaged tissue.
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| Ventilated for the second time after picking up an infection |
Jaundice
Jaundice is extremely common not in just premature babies but also in full term babies. Jaundice develops due to the build up of the yellow pigment; biliruben (a waste product of red blood cells). The yellowish tinge of the skin or eyes is caused by the pigment not being disposed of quickly enough. It often clears up in a few days when the baby’s liver functions correctly. If not, phototherapy can be used to change the shape of the biliruben so that it is easier to excrete. If this doesn’t work, blood transfusions can help to break down the biliruben. Finally, investigations into the liver function or others causes are started.Felix has conjugated biliruben Jaundice and after phototherapy and one transfusion, he is now on various medication for his liver function. His levels are dropping, but very slowly. For the first month his stools were very pale which concerned the doctors. As he is naturally a dark skinned baby it is difficult to see how much the Jaundice is affecting his skin colour, what we can see though is a yellowing in the pale of his eyes.
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| Felix under three phototherapy lights |
References
Bradford N. “Your Premature Baby. The First Five Years” 2000, Tommy’s Baby Charity (Available Here)
Bliss Charity Website
