About Baby Loss

One of the most challenging aspects of a molar pregnancy is that many people have never heard of it, making it difficult to access the information and support you need. A molar pregnancy, also known as a hydatidiform mole, occurs when an abnormal fertilized egg implants in the uterus. Instead of developing normally, the cells that would typically form the placenta grow rapidly and take over the space where the embryo would develop. Molar pregnancies are rare, occurring in about one in every 600 pregnancies, and can be classified as either partial or complete.

In a partial molar pregnancy, two sperm fertilize a single egg, resulting in too much genetic material for the embryo to develop properly. In a complete molar pregnancy, the egg lacks genetic material, and one or two sperm fertilize it, but without the necessary chromosomes, the embryo cannot form.

• Missed period/s and a strong positive pregnancy test
• A lot of nausea (feeling sick) or vomiting. This can be very troublesome
• Irregular bleeding from the vagina. The blood may contain little fluid filled cysts (like tiny grapes)
• Symptoms like those of a miscarriage, including pain and bleeding

Your doctor may notice other changes that suggest molar pregnancy:

• Your uterus may be larger than expected from your dates
• Your ovaries may be enlarged (due to the high levels of hCG)
• You might have high blood pressure and protein in your urine, though this is rare

A molar pregnancy is a random occurrence. While doctors understand the process behind it, there are no clear underlying causes or risk factors, aside from having had a previous molar pregnancy. It simply happens by chance.

In approximately 14% of complete moles and 1% of partial moles the trophoblast not only grows very quickly, but also burrows more deeply into the uterus than it should. In these rare cases, the trophoblast cells can become malignant (cancerous) and invade and spread to other parts of the body. This is called invasive mole. If it is not treated, it can develop into choriocarcinoma. This is an extremely rare complication of hydatidiform mole.

The very small risk of developing invasive mole or choriocarcinoma is the reason that molar pregnancies are followed up. It is also the reason that the follow-up centres are located in units dealing with cancer (oncology) or trophoblastic tumours. They can detect trophoblastic disease very early and the cure rate is almost 100%.

A large number of miscarriages can be dealt with at home and are therefore not recorded but it is thought to be that 1 in 4 pregnancies end in early miscarriage (up to 14 weeks) and 1 in 100 pregnancies end in late miscarriage (14 to 24 weeks). Women who have taken more than a year to conceive are twice as likely to miscarry than those who conceive within three months. Sadly, it is also quite common for couples to go on to have more miscarriages as 1 in 100 couples experience recurrent miscarriage (3 or more in a row). However, women experiencing recurrent miscarriages, are still likely to go on to have a successful pregnancy in the future.

Spotting, bleeding or abdominal pain can indicate a threatened miscarriage. Leaking of amniotic fluid is also a symptom of late miscarriage (after 14 weeks). Even though these signs can indicate that a miscarriage may be imminent, many women still go on to have a healthy pregnancy so it’s important to consult your doctor or midwife for advice. Many women also experience what is called a “delayed miscarriage”. This is where the baby has died or not developed properly in the womb but no symptoms have been felt. This can be very distressing as parents will only discover the problem at the 12 or 20 week scan.

Many miscarriages are unexplained as further research is needed to fully understand why they occur. Over half are caused by genetic faults. Some rarer causes of miscarriage include:

• Changes in hormone levels
• Blood clotting
• Infection such as toxoplasmosis, chlamydia and listeria
• Diabetes or liver disease
• Weak cervix, irregular shaped uterus or fibroid growths in the uterus
• Developmental problems in the baby such as spina bifida or heart defects
• Workplace conditions such as being exposed to toxic chemicals, radiation, lead or solvents

Mums have the choice of waiting for the miscarriage to start or finish naturally at home, or to have a minor operation called an ERPC (Evacuation of Retained Products of Conception) previously called a DNC to remove any remaining pregnancy tissue. Mums may also be offered tablets to help start or complete the miscarriage. A late miscarriage (14 – 24 weeks) will most likely be dealt with in hospital as an ERPC cannot be offered after this stage. In these cases, labour will be induced.

Miscarriage can effect anyone regardless of your age, medical background or previous fertility history. Ways to help have a safer pregnancy include achieving a healthy weight before trying for a baby, giving up smoking, and no longer take recreational drugs.

Report any symptoms or signs of infection to your midwife straight away. You may have an infection if you experience pain whilst passing urine, pain in your abdomen or loin, blood in your urine, or a high temperature.

Vomiting or diarrhoea can also be signs of an infection.

Ask your doctor about being prescribed junior aspirin to help prevent blood clots.

Don’t take Ibuprofen whilst pregnant.

Pregnancy isn’t always predictable. Every year over 20,000 expectant parents will get the news that their baby may not be developing as expected. In these circumstances, you would usually be referred to a fetal medicine specialist team for further investigations. If these investigations reveal that your baby is not developing as expected, potentially due to a serious genetic or structural condition, you may be offered to end your pregnancy. This is known as ‘Termination for Medical Reasons (TFMR). TFMR may also be recommended if pregnancy complications arise that pose a significant risk to your health or to your baby’s survival.

Choosing a termination for medical reasons is an intensely difficult and personal decision, and only you can determine what feels right for you. There is no “right” or “wrong” choice in these circumstances—what matters most is making the decision that aligns with your own values and circumstances. You will be presented with all of the specialist information which can help you come to a decision.

Occasionally, something is detected during an antenatal scan meaning you may need more frequent scans or referral to specialist, however your healthcare professional does not discuss termination of pregnancy with you. This is because they do not believe the condition they have found is serious enough to warrant ending the pregnancy.

If your doctor does not offer ending a pregnancy and you feel that your baby’s condition is life limiting or you feel unclear, you can ask for a second opinion or see your GP, who can discuss further options up until 23 weeks and 6 days’ of pregnancy. 

If you are 24 weeks pregnant or more and your doctors do not support ending a pregnancy, you should be referred for a second opinion. At this stage, the law around ending a pregnancy becomes stricter. It can only be offered if 2 doctors agree that:

1. it would prevent grave, permanent injury to your physical or mental health
2. carrying on with your pregnancy involves risk to your life
3. there is a substantial risk of your baby being born with serious disabilities

Under 13 weeks:

If you are less than 13 weeks pregnant, most hospitals will usually give you the choice of medical induction (you will have labour and birth) or a surgical termination under general anaesthetic.

Over 13 weeks:

NHS: If you are over 13 weeks pregnant – most hospitals can only offer medical induction to end the pregnancy. This is because there are few trained surgeons working in the NHS.

Most hospitals give a tablet of Mifepristone 24-48 hours before admission to hospital for the induction. If you find this is too long to wait, you can ask for admission to hospital 12 hours after taking the tablet. There is a 1% chance you may begin labour earlier than expected. If there are any signs, for example a ‘show’ or pains, you should go straight to the hospital. If you have any concerns after taking the tablet, contact your doctor or midwife.

Privately but funded by NHS: It is possible to have a surgical procedure up to 23 weeks 6 days) with an independent abortion provider, such as the BPAS or MSI Reproductive Choices under NHS contract. Although independent services in the UK are highly competent and professional, for some women it can feel difficult being in an environment where terminations are being carried out because the pregnancy is unwanted. Do speak to the team where you are based, some providers offer a dedicated service for TFMR.

Over 21 weeks pregnant:

If you are more than 21 weeks pregnant – it may be suggested that the baby is given an injection (the medical name for this is feticide). This is to ensure that the baby dies before the induction of labour. This procedure is usually done in a specialist fetal medicine centre. You will be supported to labour and birth baby.

It is a decision no one wants to make. There are helpful organisations that can support you during the decision making process and after a termination has happened.

Making a decision

Antenatal Results and Choices can give you impartial information and support to help you decide on your next steps. They have information for family members if this would be useful.

Helpline: 0207 713 7486 Email: info@arc-uk.org Text: 07908 683004

After termination

Antenatal Results and Choices can offer support for you and your loved ones. This includes publications, forums, helpline and parents meetings.

TFMR Mama’s was created by Emma Belle after sadly losing her baby girl, Willow, to TFMR due to Edwards Syndrome. TFMR mama’s is not open to those who are still unsure about their decision on how to proceed with a pregnancy, as they do not want to influence anyone’s choice or decision.

TFMR Mamas provides Free monthly support groups and paid weekly support group options for TFMR Mamas & Private facebook groups for TFMR Mamas, LGBTQ+, Papas and Grandparents.

A baby born showing no signs of life at or after 24 weeks gestation. Around 4,800 babies are stillborn or die shortly after birth (neonatal deaths) every year in the UK, that’s 13 every day, over 90 every week. The UK has one of the worst stillbirth rates in the developed world. There are currently around 615,000 live births and 2,400 stillbirths per year in the UK which means around 1 in every 250 pregnancies result in stillbirth, around 7 every day.

The most common causes of stillbirth are problems with the placenta (including growth restriction), pre-eclampsia, infections such as Group b strep and pregnancy conditions such as ICP and gestational diabetes.

Other causes of stillbirth include congenital malformations, maternal medical problems and birth complications and infections. However, up to a third of cases cannot be explained.

While there is no doubt that discussions around stillbirth are difficult, it’s also important to be aware that things can sometimes go wrong in any pregnancy. Pregnancy and childbirth are natural processes and most pregnancies are trouble-free. But sometimes mums and babies can become ill in the later months of pregnancy. While not all stillbirths are preventable, some are. Ways to help have a safer pregnancy include achieving a healthy weight before trying for a baby, giving up smoking, cutting out alcohol and no longer taking recreational drugs. Attend all your antenatal appointments and don’t hesitate to contact your maternity team if you have any questions or concerns.

Remember to monitor your babies movements and report ANY change in pattern to your maternity ward straight away. It’s important to tell your midwife if there is any history of diabetes in the family as you could develop gestational diabetes. Ask for a Glucose Tolerance Test to be carried out as soon as possible for if you have developed the condition, you will need to record your blood sugar levels every day and adopt a special diet.

Report any signs of infection to your midwife straight away. You may have an infection if you experience pain whilst passing urine, pain in your abdomen or loin, blood in your urine, or a high temperature. Vomiting or diarrhoea can also be signs of an infection.

Please visit our Call The Midwife page to learn about other symptoms to look out for which should be reported to your midwife straight away.

Everyone is at risk and should be empowered with information but those at more at risk are:

• having twins or a multiple pregnancy.
• having a baby who doesn’t grow as they should in the womb.
• being over 35 years of age.
• smoking, drinking alcohol or misusing drugs while pregnant.
• being obese – having a body mass index above 30.
• having a pre-existing physical health condition, such as epilepsy or diabetes.
• Those who have suffered a previous loss.
• babies from the Black ethnic group have the highest stillbirth rate.

A neonatal death (NND) is when a baby is born alive at any gestation and then dies within the first 28 days of life.

After the loss of a baby, it is natural for parents to seek answers about why their baby died/what happened. In some cases, the cause is clear, while in others, a post-mortem examination may provide insight into what went wrong. However, there are times when, despite the investigations that are carried out thorough testing and examinations, the reason for the loss remains unknown. This uncertainty can be particularly difficult for parents as they navigate their grief and search for closure.

Common causes of neonatal death often include factors such as premature birth, where babies born too early or too small. These babies can face a higher risk of infections or severe health issues. Complications can also occur during or after birth and include infections and congenital anomalies, such as lung or heart problems. The most common cause for neonatal death is currently congenital anomalies, which contributed to one-third of all neonatal deaths.

A multiple pregnancy is also associated with an increased risk of neonatal death. Between 2016 and 2020 the neonatal death rate increased 16% for twin pregnancies. The neonatal mortality rate for twins is 3.5 times higher than for singletons.

In the UK, research suggests the risk of a baby dying is influenced by poverty, ethnicity and the age of the mother.

While these are common factors, each baby is unique, and understanding the specific cause may not always be possible.

While there is no doubt that discussions around neonatal death are difficult, it’s also important to be aware that things can sometimes go wrong in any pregnancy and birth. While not all neonatal deaths are preventable, some are and there are steps that can be taken to help have a safer pregnancy. This includes achieving a healthy weight before trying for a baby, giving up smoking if you are a smoker, cutting out alcohol and no use of recreational drugs. Ensure you are taking Folic Acid and Vitamin D and attend all your antenatal appointments and scans. Don’t hesitate to contact your maternity team if you have any questions or concerns.

Remember to observe and monitor your baby’s movements and report ANY change in pattern to your maternity team straight away. It’s important to tell your midwife if there is any history of diabetes in the family as you would be at greater risk of developing diabetes in your pregnancy (gestational diabetes). Your midwife should arrange a Glucose Tolerance Test to be carried out at certain stages of your pregnancy. If you do develop the condition, you will need to monitor and record your blood sugar levels every day and adopt a special low GI diet. Depending on how well controlled your blood sugars are will indicate whether you need to start medication.

Report any signs of infection to your midwife straight away. You may have an infection if you experience pain whilst passing urine, pain in your abdomen or loin, blood in your urine, or a high temperature. Vomiting or diarrhoea can also be signs of an infection.

Please visit our Call The Midwife page to learn about other symptoms to look out for which should be reported to your midwife straight away.

Sudden infant death syndrome (SIDS) is the sudden and unexpected death of a baby where no cause is found.

The sudden and unexpected death of a baby is usually referred to by professionals as ‘sudden unexpected death in infancy’ (SUDI) or ‘sudden unexpected death in childhood’ (SUDC), if the baby was over 12 months old. The death of a baby which is unexpected is also sometimes referred to as ‘sudden infant death’.

Some sudden and unexpected deaths can be explained by the post-mortem examination, revealing, for example, an unforeseen infection or metabolic disorder. Deaths that remain unexplained after the post-mortem are usually registered as ‘sudden infant death syndrome’ (SIDS) or ‘sudden unexplained death in childhood’ (SUDC) in a child over 12 months. Sometimes other terms such as SUDI, SUDC or ‘unascertained’ may be used.

The exact cause of Sudden Unexpected Death in Infancy (SUDI) or Sudden Infant Death Syndrome (SIDS) remains unknown, but it is believed to result from a combination of factors. Experts suggest that SIDS occurs during a critical stage in a baby’s development and primarily affects infants who are more vulnerable to certain environmental stresses.

This vulnerability may stem from being born prematurely, having a low birthweight, or other unidentified factors. Environmental stresses could include exposure to tobacco smoke, getting tangled in bedding, a minor illness, or a breathing obstruction. Additionally, there is an increased risk of SUDI/SIDS when co-sleeping with a baby on a sofa or chair, and it tends to be slightly more common in boys than girls.

For preventative methods, please visit our safe sleeping page.

When looking at baby loss statistics, it’s important to remember the sucessful live births too.

Where there are around 4,500 baby deaths in the UK per year, there are also over 600,000 live births.

Every pregnancy is different and every baby is special.