Continuing with the pregnancy with a view to offering surgery at birth
If you choose to continue with the pregnancy, there are many aspects of the birth and treatment of the baby to consider. The following information explores this area of care but it is very important to talk to your obstetric and cardiac team to clarify what care is planned for you and the baby.
What sort of surgery would the baby need?
The treatments available for each specific condition will be explained to you by the fetal and paediatric cardiac medical teams. A series of operations will be required soon after birth and in early childhood. These are described in more detail in the single ventricle heart conditions and their treatments section of the website.
If we decide that we would like surgery, who will carry out the operation?
There will be a team of cardiac (heart) surgeons at the specialist centre where the surgery will take place. They work closely with the cardiologists (heart doctors) and a team of children’s nurses who specialise in caring for babies and children who have heart abnormalities.
It is often possible during your pregnancy to arrange for you to visit the hospital where the surgery is planned. This can be extremely useful as it means that you will be familiar with the intensive care unit and the wards where your baby will be treated. You may also have an opportunity to meet with a paediatric cardiac surgeon to discuss the surgical procedure. Ask the team who have made your diagnosis for more information.
Will we have to travel to receive treatment?
As this type of surgery is very specialised, there are only a small number of children’s heart units in Great Britain that have teams with the expertise needed to carry these operations. It may be necessary to travel to ensure that you and your child receive the highest-quality treatment and care.
Following discharge after surgery it may be possible for ongoing medical care to take place in a hospital closer to home.
What are the risks of surgery?
It is important to remember that each and every child is unique and that although the medical team will be able to give expectant parents an idea of the national statistics and unit statistics for surgical success, they may quote a higher or lower risk for each individual child.
Can the baby have a heart transplant?
Heart transplantation is one of the possible treatments for single ventricle heart disease, but it is not offered as a first treatment within the United Kingdom for the following reasons.
- There are very few donor hearts small enough for a baby available in the United Kingdom.
- Transplanted hearts do not last for ever and there are many risks involved throughout the recipient’s life. Offering surgery as a first treatment path and retaining transplant as a future option offers a greater chance of a longer life for the child.
Where will I have the baby?
Your baby needs to be delivered in a hospital which has a neonatal (newborn baby) intensive care unit where a specialist team can carry out the immediate care that your baby will require after birth. This team will also organise the safe transfer of your baby to the children’s heart unit if this is the plan after birth.
If the hospital where you initially booked to have the baby is a small district hospital they may not have these facilities. It may therefore be necessary to transfer your obstetric care to a unit which has these specialist services.
When an abnormality is found in a baby, the focus of attention for you and the healthcare professionals shifts towards the baby. It is very important that the needs of the mother are not forgotten. All the normal antenatal check-ups should proceed as planned with your midwife or your GP or at the hospital.
There may be extra scans arranged at the specialist unit to monitor the baby’s condition and often parents find these consultations and the time leading up to them stressful, as they wonder if further problems may be detected. You may find that the specialist midwife or the specialist cardiac nurse are an invaluable source of support and can help you with the ongoing concerns you have about the pregnancy and birth (make sure you take the number of the specialist nurse with you at the end of any appointments). They will also be able to liaise between the cardiac team from the heart unit, your own hospital, your GP and community midwife to ensure that all carers are kept up-to-date with information and the baby’s condition.
Preparing for the birth
Many parents feel increasingly anxious as they approach the time of birth. Mothers often express how they feel protective of their unborn baby, knowing he or she is safe inside them. Facing the reality of what their baby will go through after birth is a daunting prospect over which they have little control.
The obstetric team will put you in touch with the specialist cardiac nurse at the hospital where your baby will receive their treatment. They will arrange for you to visit the children’s hospital and speak to the team who may look after your baby once they are born.
Once again, being able to talk through these feelings with your midwife, GP, obstetrician or cardiac specialist nurse can be helpful.
How will I tell the baby’s brothers or sisters about their heart condition?
It is important that all of the children in the family have an idea that their baby may have a problem with their heart so that they are not surprised if the baby stays in hospital after birth. They may well be picking up your upset around the diagnosis and hearing that you are worried about the baby. Don’t try to hide all your feelings from your other children.
The most helpful advice when telling siblings about a sick baby is to be guided by their questions, and to answer them in as honest and non-frightening ways as possible. ‘Talking to Children’ is a helpful book that can help guide the conversation, visit www.arc-uk.org/for-parents/publications-2/talking-to-children-2
Will I need a Caesarean section?
Many parents, understandably, think that because the baby has a heart problem, a Caesarean section would be the safest way to give birth to the baby.
In fact, for most mothers, the opposite is true for the following reasons:
Whilst the baby is in the womb, it is receiving all the oxygen it needs from the mother via the placenta (afterbirth) and this continues throughout labour until the baby is born and the umbilical cord is cut.
Being born naturally allows the baby’s chest to be squeezed as it comes through the birth canal. As the baby is born the release of pressure on the chest encourages the baby to take a deep breath and this helps the lungs to expand.
Mothers understandably want to spend as much time as possible with their baby in the time leading up to the first operation. Their recovery following a normal vaginal birth will be much quicker than following a Caesarean section.
During labour the baby’s heartbeat will be monitored. If there are any signs of distress, or if there are problems for the mother, a Caesarean section may become necessary.
Some mothers may require a Caesarean because of problems that they have had with a previous birth or because of a problem with the size of their pelvis or birth canal. If this becomes necessary the maternity hospital will link with the cardiac team to ensure that the mother has as much contact with the baby as possible.
The most important thing to remember is that the mother and baby are kept as well as possible.
Will I need to be induced?
It is preferable for your baby to be born at the end of pregnancy, when it is well grown and the lungs are mature, and you go into labour naturally.
Prior to 34 weeks of pregnancy, the baby’s size in combination with immature lungs may mean that surgery is not possible.
However, it may be necessary to induce labour for the following reasons:
- If you have gone past the date when you expect to have your baby.
- If your blood pressure rises and it is felt that it is safer for the baby to be delivered.
- If the baby stops growing.
If you are giving birth to your baby at a unit which is some distance from where you live, it may be easier to plan a date for induction of labour after the 38th week of pregnancy.
This can be planned in liaison with the neonatal unit and the specialist cardiac unit to ensure cots are available.
Can my partner be with me when I have the baby?
As with all normal deliveries your birthing partner can be with you in the delivery room. In most cases this would be your partner, a member of your family or a good friend.
If you need a Caesarean section and you are awake for the delivery your birthing partner can be with you so that you can share the birth of your baby. If the Caesarean section is an emergency, or you chose to be asleep for the procedure, your birthing partner can be close by in the recovery room. Once the baby has been born safely they will be able to hold the baby whilst the procedure is completed.
In all cases the baby will be seen by a neonatologist (baby doctor) first to make sure that they are stable. If the doctor is happy with the baby’s condition you will be able to hold the baby.
Will I see the baby after he or she is born?
The baby should be in good condition at birth as the connection (ductus arteriosus) between the lung artery (pulmonary artery) and the body artery (aorta) does not close immediately. A neonatologist (baby doctor) will be on hand at birth to assess the baby’s condition.
If the baby is stable, there should be no reason why you should not be able to hold and cuddle your baby and put the baby to the breast if that is your wish.
After a short while, the neonatologists will want to take the baby to the neonatal unit to insert a drip (infusion). In the case of babies dependent on the fetal circulation, this enables the neonatologists to give the hormone Prostaglandin, which keeps the ductus arteriosus open and aims to keep the baby stable until they receive their first surgical treatment.
Who will be looking after the baby?
The neonatologist and nurses in the neonatal unit will be caring for your baby and working to keep the baby’s condition stable. A scan of the baby’s heart will be carried out when the baby reaches the heart unit. On the basis of the assessment, surgery can be arranged and at every stage the doctors will discuss the plan of care for the baby with you.
Your partner and immediate family – other children and grandparents – can visit the baby on the neonatal unit and depending on how you feel after the birth, you will be able to spend as much time as possible with the baby. Do check your hospital’s visiting policy.
If the baby has to be transferred to a specialist heart unit, can we go with him or her?
You will be encouraged to go to the children’s heart unit with your baby, although the baby will travel by ambulance with medical staff if the heart unit is in a different hospital.
If you are well enough to be discharged you may follow the baby in your own car or the hospital will arrange transport if you are still a patient.
The children’s hospital will find accommodation for both parents so that they can stay near to the baby. They often also have space to accommodate siblings who may like to visit through treatment.
Will I be able to breastfeed the baby?
Once the newborn baby’s condition has been assessed and if they are found to be stable it may be possible to put the baby to the breast soon after delivery. Once the drip has been inserted and the baby is receiving Prostaglandin to keep the duct open, it may be possible to try different feeding methods.
Although breastfeeding will be encouraged, it is important to understand that feeding will be very tiring for the baby. To help support their heart function, they will need to have more calories than other babies, but they often do not have enough energy to take all the milk that they need. A mixture of feeding styles may be needed. For example, bottle or breastfeeding, calorie additives/special high-calorie milks and nasogastric feeding will ensure that the baby receives enough calories to grow.
If you are keen to breastfeed, ask for support from the hospital team and your visiting midwife. It may also help to talk to other parents who have successfully breastfed a baby with complex heart disease. This can be done through the hospital or through Little Hearts Matter. Even if breastfeeding is not possible, there may still be an opportunity to express breast milk. The dietitians can add extra calories and the milk can be given by a bottle or nasogastric tube.
Mothers of babies with complex heart complex heart conditions should never worry if breastfeeding is not possible. It is tough to feed by breast and the stress of all the hospital treatment and worry about the baby can create problems with milk production for the mother.
Who looks after the mother after the birth?
It is important that after the birth the mother’s medical needs are not forgotten in the midst of all the care being organised for the baby. Before the mother can be discharged from the maternity unit she will be examined by one of the obstetric team at the maternity unit. She will then be transferred to the care of either her home-based community midwife or the community midwife who covers the children’s cardiac unit. A new mother needs regular check-ups from the midwife. If there are any concerns about her condition whilst at the children’s unit, a midwife will be called and any hospital care will be organised at the closest maternity unit.
Although the mother is worrying about the baby, she must organise plenty of rest for herself and eat regularly. She needs to recover well from the delivery so that she has the energy to look after the baby once they are discharged home.