What happens once your baby is born
You will not know how Spina Bifida affects your baby until your baby is born.
A Caesarean section (CS) is the recommended method for delivering babies diagnosed with Spina Bifida. This is usually carried out at 39 weeks gestation, prior to the onset of labour. If you go into labour prior to this, an emergency CS will be performed.
A Paediatric specialist will be present at the birth of your baby. They will examine the baby and arrange admission to Newborn intensive care unit (NICU) for observation and care and organize other investigations as necessary.
A lot will happen immediately after the birth of your baby. The hospital staff will concentrate on meeting the special medical needs of your baby. Numerous specialists will examine your baby. This may take some time and will be a period of uncertainty for you. You will be introduced to these specialists by the hospital staff. They will explain your baby’s condition and suggested treatment. You can ask them questions until you are sure you understand the situation.
As well as a general examination, the doctors will assess the size and position of the back lesion (which can be slightly different to what is seen on the antenatal scan) and the function of the legs.
For most babies the initial treatment will be an operation carried out by a Paediatric neurosurgeon to close the lesion in the back to prevent further damage of the nervous tissue and to prevent infection. During the operation for Spina Bifida, the spinal cord and its nerve roots are put back inside the spine and covered with its coverings. In addition, a shunt may be surgically installed to provide a continuous drain for the cerebrospinal fluid produced in the brain, as happens with hydrocephalus. Shunts most commonly drain into the abdomen.
There is no known cure for nerve damage due to Spina Bifida after birth.
Most individuals with Spina Bifida will need periodic evaluations by specialists including orthopaedists to check on their bones and muscles, neurosurgeons to evaluate the brain and spinal cord and urologists for the kidneys and bladder. Such care is best begun immediately after birth.
So what can I expect to happen in the NICU?
A head ultrasound may be performed in the first few days of life to assess the severity of any hydrocephalus. This will help in making a decision as to whether a shunt operation is required. You may already know whether your baby has hydrocephalus from an antenatal ultrasound, but an ultrasound after your baby is born may still be performed as it gives a more accurate picture. The head circumference of your baby will be measured daily to monitor the hydrocephalus.
After the back and shunt operations, your baby will remain in the NICU where suitable nursing care is available at all times.
A bed will be arranged for you in the maternity ward. You are will be encouraged to visit your baby often and be involved in your baby’s cares. This may include changing nappies, holding, caring, comforting and feeding your baby as the situation allows.
If you would like to breastfeed your baby, let the NICU nursing staff know. Some babies will feed easily. For medical reasons feeding may not be as straightforward as it is for other babies.
After the operations it may take several days before the doctors are confident the operations have worked and that the wounds are healing. It can be hard to be patient over this time when your discharge is uncertain. As your baby’s parents you have the right to full and timely information about your baby’s condition and the care he or she receives. You can expect to be kept informed and to be consulted about your baby’s care. If at any time you are unsure or have any questions, please ask.