Austin’s Story and A Very Special Gift

Austin’s Story

Ashley, one of the members of Sophie’s Angels has very kindly offered to let me tell the story of her precious angel, her much loved and very sweet baby boy Austin. She was 41 weeks and 2 days pregnant when she found out that Austin has passed away and she says ‘The 24th of August 2017, was the day my world changed forever. At 41+2 we heard the words no parents ever want to hear. Our little boy had gone. Two days later Austin was born. Heartbroken doesn’t quite cover it, in fact, it doesn’t come close’.

Something that not many people consider, and it took me by surprise when it happened after Sophie passed, is that you still produce milk… because to your body… you have had a baby and therefore the milk begins to flow! I personally found this to be one of the hardest things, but Ashley has turned this into something positive ‘Throughout this horrific situation one overriding feeling was present, a lack of control. However, there was one thing I could control, what would happen to his milk. Like so many angel parents before me, I had the overwhelming urge to do-something, anything, to help others. So I refused the pill and began to pump’. Ashley is a nurse and breastfeeding supporter so she felt very strongly that she should be able to help other babies in need. She says ‘Leaders of my local breastfeeding support group were able to put me in touch with my nearest milk bank to begin the process. I learned that early milk is particularly important to the most vulnerable babies, those in special care, which meant that Austin’s milk could be lifesaving’.

Knowing that her milk was helping others gave her a great deal of comfort, and since Austin passed away she has started to help to support other people and she then explored the possibility of milk donation among angel parents. She says ‘I was lucky that owing to my past experience and being a member of a national breastfeeding support group I had excellent support. I was however, sad to learn that this is not true for everyone going through this unique situation. That really hit a nerve’.

Milk donation and the comfort it can give to Angel parents

As Ashley started to talk to grieving parents and bereavement professionals she noticed several things, these included:

  • Not being aware of milk donation.
  • Being given medication to prohibit lactation without any explanation and even in some cases consent, and this reinforcing their feelings of loss of control.
  • Professionals said it was difficult to have these conversations at such an emotional time
    The option not being discussed in a positive light, by family and professionals.
  • Professionals and friends/family not aware of how it can be a positive way of making and maintaining connection with baby, mothers report that ‘creating a legacy’ can be very helpful during the process of grieving.
  • Not knowing how to access information regarding milk donation/banking and accessing/loaning pumps.
  • Mothers have talked about not knowing how to, or, not wanting to access usual breastfeeding support owing to unique nature of their situation and discuss a feeling of ‘not fitting in’.
  • Pumping mothers describe lack of support relating specifically to exclusive pumping, feeling isolated during this time and discuss desperately wanting to seeking out others who have experienced similar for both practical and emotional support.
  • Mothers who were already pumping for babies in NICU/SCBU settings report support stopping when baby died and them not knowing how to manage either stopping pumping, or continuing to donate.
  • Mothers who do not wish to donate not having any information on how to manage milk coming in.

A Very Special Gift

A Very Special Gift was created in response to the research conducted by Ashley; she wants to increase awareness of donating ‘legacy milk’ & provide these special people the support they deserve.

If you could share this to spread the word about A Very Special Gift then that would be amazing, this is such a worthwhile and important cause for both angel parents and also parents with babies in NICU, for who donor mile is potentially lifesaving.

Feel free to contact them for more information; you can email averyspecialgift@outlook.com, see their Facebook page, or follow them on Twitter @legacymilkgift. If you have experience of milk donation after loss then they also have a closed Facebook group.

They are also currently fundraising so that they can produce a website and create more awareness, please don’t feel obliged to, but if you would like to donate then please click here.

HELLP Syndrome

What is HELLP Syndrome?

HELLP Syndrome usually occurs during the third trimester, but around a third of cases occur after the baby is born, rarely it can occur before 21 weeks of pregnancy; it is a rare liver and blood clotting disorder that affects around 1 in 125 women during pregnancy or after giving birth. It is a serious and potentially life threatening condition so please contact your care provider if you exhibit the signs or symptoms.

What is HELLP Syndrome?

HELLP stands for:

H – haemolysis (the red blood cells break down)

EL – elevated liver enzymes (proteins) (a high number of enzymes in the liver is a sign of liver damage)

LP – low platelet count (platelets help the blood to clot)

Symptoms of HELLP Syndrome

The symptoms of HELLP Syndrome are very similar to the symptoms observed with pre-eclampsia (the two conditions are often related). You may experience one or more of these symptoms:

  • Headache
  • Nausea/vomiting/indigestion with pain after eating
  • Abdominal or chest tenderness and/or upper right side pain (from liver distention)
  • Shoulder pain
  • Pain when breathing deeply
  • Bleeding
  • Changes in vision
  • Swelling/weight gain

Your midwife or doctor will check for the following signs during your antenatal appointments:

  • High blood pressure
  • Protein in the urine

The most common reason for HELLP becoming fatal is liver rupture or stroke (cerebral oedema or cerebral haemorrhage), which can usually be prevented when caught in time.

How HELLP Syndrome affects babies

If a baby weighs at least two pounds at birth, they have the same survival rate and health outcome of non-HELLP babies of the same size. Unfortunately, the outcome for babies weighing less than two pounds at birth is not as good; these babies may need longer hospital stays and will have a higher chance of needing ventilator care because their lungs did not have enough chance to develop in the womb. Around 1 in 10 babies born to women with HELLP will pass away and this is often link to their prematurity.

Treatment of HELLP Syndrome

With treatment, the mortality rate of women with HELLP Syndrome is around 1 in 100, although complications can occur in about 1 in 4 women. The only way to treat the condition is for the baby to be born as soon as possible. Many women suffering from HELLP syndrome will also require a transfusion of some form of blood product (red cells, platelets or plasma).

What can I do to prevent HELLP Syndrome?

Unfortunately, there’s currently no way to prevent this illness. Things that could help to make sure it’s diagnosed early are:

  • Regular antenatal check-ups during pregnancy
  • Inform your midwife about any previous high-risk pregnancies or family history of HELLP Syndrome, pre-eclampsia, or other hypertensive disorders
  • Understand the warning signs and talk to your midwife or Doctor immediately
  • Trust yourself when “something just doesn’t feel right”.

Placenta Previa

The placenta is the baby’s lifeline during pregnancy, it’s an organ which grows in the womb and is connected to the baby via the umbilical cord; it provides baby with Oxygen and nutrients which pass from your blood supply into the placenta and are then carried to your baby via the umbilical cord; carbon dioxide and other waste products are also carried away from the baby by the umbilical cord to the placenta and then into your bloodstream for disposal. Hormones produced by the placenta help your baby grow and develop; It offers your baby protection against bacterial infections while in the womb, and towards the end of pregnancy it passes antibodies from you to your baby which should give him or her immunity for about three months after birth. However, it only passes on antibodies that you already have. In most pregnancies, the placenta attaches at the top or side of the uterus. Placenta previa occurs when a baby’s placenta partially or totally covers the mother’s cervix, which can cause severe bleeding during pregnancy and delivery.

If you have placenta previa, then you may bleed throughout pregnancy and during delivery; and your doctor will probably recommend that you avoid certain activities, such as, having sex and running. If the placenta previa is diagnosed early in pregnancy then there is a chance that the placenta will move as the uterus grows, however, If the placenta doesn’t move then you will need a caesarean section. You should call your doctor if you have vaginal bleeding during the second or third trimester, and if the bleeding is severe then you should seek emergency care.

Diagnosis

An ultrasound scan will be used to diagnose placenta previa, and you will probably need extra ultrasounds throughout your pregnancy to check the position of the placenta.

Treatment

There is no medical treatment for placenta previa, however there are ways to manage the bleeding; the recommendations will depend on various factors:

For little or no bleeding

  • Pelvic Rest – avoiding activities that can trigger bleeding, such as sex and exercise.
  • Seek emergency care if bleeding starts.
  • If the placenta is low lying but doesn’t cover the cervix, you might be able to have a vaginal delivery. Your health care provider will discuss this option with you.

For heavy bleeding

  • Seek immediate emergency help, Some women with severe bleeding may require a blood transfusion.
  • A Caesarean will be planned for as soon as the baby can be delivered safely (ideally after 36 weeks of pregnancy)
  • If bleeding persists you may need an earlier delivery and you will be offered steroids to mature your baby’s lungs.

For bleeding that won’t stop

  • If your bleeding can’t be controlled or your baby is in distress, you’ll need an emergency C-section — even if the baby is premature

Risk Factors

Although the cause of placenta previa is largely unknown, there are certain things that have been found to increase the risk. These are:

  • Have had a baby before
  • Have scars on the uterus from previous surgery (caesarean deliveries, uterine fibroid removal, and dilation and curettage)
  • Had placenta previa with a previous pregnancy
  • Multiple pregnancy
  • Are age 35 or older
  • Smoking

Complications

You will be monitored to reduce the risk of serious complications such as:

  • Severe bleeding (haemorrhage) which can occur during labour, delivery or in the first few hours after birth.
  • Severe bleeding may prompt an emergency C-section before your baby is full term.

Have you experienced placenta previa? What was the outcome? What support did your care provider offer you?

Placental Abruption

Overview

The placenta is the baby’s lifeline during pregnancy, it’s an organ which grows in the womb and is connected to the baby via the umbilical cord; it provides baby with Oxygen and nutrients which pass from your blood supply into the placenta and are then carried to your baby via the umbilical cord; carbon dioxide and other waste products are also carried away from the baby by the umbilical cord to the placenta and then into your bloodstream for disposal. Hormones produced by the placenta help your baby grow and develop; It offers your baby protection against bacterial infections while in the womb, and towards the end of pregnancy it passes antibodies from you to your baby which should give him or her immunity for about three months after birth. However, it only passes on antibodies that you already have.

In 2013 the NCBI (National Center for Biotechnology Information) published a study which found that placental abruption affects 0.7% – 1% of pregnancies; however, according to Tommy’s it is suspected that this figure may be higher as abruption isn’t always diagnosed. This is a serious condition in which the placenta begins to detach from the uterus, meaning that the baby can become starved of oxygen and nutrients.

Causes and Risk Factors

Very often the cause of abruption is unknown; however, there are factors that can increase the risk. These are:

  • Abdominal trauma – maybe from a fall or a car accident
  • Previous placental abruption
  • High blood pressure
  • Smoking
  • If your waters have broken prematurely
  • Blood-clotting disorders
  • Multiple pregnancy – the delivery of the first baby can cause changes in the uterus that trigger placental abruption before the other baby or babies are delivered.
  • Maternal age – women over 40
  • Using drugs (especially cocaine) in pregnancy
  • Previous caesarean birth
  • History of recurrent miscarriages

Symptoms

Placental abruption occurs most frequently in the last trimester of pregnancy (especially in the last few weeks) and symptoms include:

  • Vaginal bleeding
  • Abdominal pain
  • Back pain
  • Uterine tenderness
  • Rapid uterine contractions, often coming one right after another

Abdominal pain and back pain often begin suddenly and the amount of bleeding can vary. If the blood becomes trapped inside the uterus by the placenta it is also possible to have a severe placental abruption with no visible bleeding. In some cases, placental abruption develops slowly. If this happens, you might notice light, intermittent vaginal bleeding. Your baby might not grow as quickly as expected, and you might have low amniotic fluid (oligohydramnios) or other complications

If you notice any of the symptoms then please get medical help immediately because they may signify an emergency.

Treatment

The treatment for placental abruption will depend on the severity and gestation. Women under 34 weeks with a minor placental abruption are usually monitored closely in hospital, your care provider will ensure that baby is growing correctly, and will also look for any signs of preterm labour. If there is a risk of your baby not growing properly then labour may be induced. If the abruption is more severe, you are losing lots of blood and the baby is in distress or at risk of not growing properly you may need to have your labour induced or have an emergency caesarean.

Complications

Placental abruption can cause life-threatening problems for both mother and baby.

Mother

  • Shock due to blood loss
  • Blood clotting problems (disseminated intravascular coagulation)
  • The need for a blood transfusion
  • Failure of the kidneys or other organs
  • Hysterectomy

Baby

  • Oxygen and nutrient deprivation
  • IUGR
  • Premature birth
  • Stillbirth

The study showed that:

19% of cases were stillborn, 11% of new born baby’s had an apgar score under 7 at 5 minutes, 34% of newborn baby’s had weight less than 2500g (2.5kg or 5lb 8oz) and 40% of newborn babies were admitted to NICU.

Have you suffered with placental abruption? Please feel free to share your story

Edward’s Story

Written by Edward’s mum Samantha. 

I’m lucky I have 4 earth babies who are my world but me and my partner decided we wanted one more, so we started trying and when we finally got bfp (big fat positive!) we were so excited. We went to 12 week scan and everything looked perfectly normal so my partner start buy bits and we also started to tell people our exciting news.

Everything was going great; we started looking for a bigger house and we found perfect house just before my 20 week scan. Little man was being a monkey and was laid transverse with hand his legs crossed during this scan; and we were therefore asked to go back at 22 weeks to get the rest measurements; everything was perfect and the sonographer said that the placenta was completely clear, and she told us we were having a little boy!

edward2

We were really excited and moved into our new home. I had to take my eldest to an appointment and I went to use the toilet, it was then that I discovered that I was bleeding, through shock and worry I telephoned the pregnancy assessment unit for advice; unfortunately midwife who I spoke to was really snotty with me over the phone because I had carried my notes with me; she told me that it would just be provoked bleeding, and the baby was active then it wasn’t urgent, therefore I could just go up whenever I wanted but it wasn’t urgent. I didn’t go to the hospital because she was so snotty and officious, and gave me the impression that I was worrying over nothing and it was almost like I was wasting their time.

Saturday at work and I fell on a wet floor and I was in agony all day; so when I left work I went home and tried to relaxed. On the Monday I went for the rescan to try to check his measurements (I was now 22 weeks). We managed to get my little monkey measured this time and I mentioned to sonographer that I had a bleed; she checked my placenta and discovered that I had grade 4 placenta previa, which means that the placenta was completely covering my cervix. She gave me some information about placenta previa and I was advised to be careful and not to have sex. That evening I went home and relaxed.

Edward4

I woke up on Tuesday morning to find that I was bleeding again; I was rushed to hospital and admitted, I stayed in hospital for a week. On the 27th September 2014 I was discharged from hospital and placed on bed rest; However, the bleeding resumed on 28th September but this time it was much heavier. I was now 23 weeks and I was blue lighted to hospital, when I arrived the bleeding seemed to have stopped, the doctor scanned me and said that the baby was fine; he left the room and said that he would be back in an hour.

Approximately 30 minutes later I started bleeding again, and this time it was like a tap which had been turned on. The room was now filled with staff that came running, obstetricians, paediatricians and loads of midwives. My mum (who was with me at the time) had to leave the room and I was so scared. Again, the bleeding stopped and I was placed on complete bed rest and had to be catheterised. I couldn’t really sleep that night and I was scared to move; every time I moved or pumped I lost massive blood clots. The doctors kept saying that I needed 24 hours clear from bleeding so that I could be transferred to a hospital that could care for my handsome little man.

edward5

That morning my consultant came in on his day off, he insisted that I was transferred to a hospital that could cope and we finally arrived at that hospital at 1pm on the 29th of September 2014. At 7.30pm I started bleeding again and by this point I had lost 3 litres of blood; I was therefore rushed in for an emergency caesarean section.

My angel was born weighing 1lb 7 ounces; he was beautiful, so small and dinky. Edward was a fighter; he came out fighting so the doctors tried to help him. Unfortunately, on the 1st October 2014 Edward had a haemorrhage on his lung; however, he responded well to treatment. They were going to scan his brain again on Friday and it was perfect, with no sign of blood leaks. However, at 11 o’clock Edward’s tiny body just couldn’t fight any more and our angel was taken to heaven and piece my heart went with him.

Edward3

Incompetent Cervix

What is an Incompetent Cervix?ic2

With an incompetent cervix the cervical tissue is weak and this can then cause premature labour in the second and third trimesters; if the labour begins too soon the baby will not be viable and will therefore be stillborn. The cervix is usually closed and rigid before pregnancy; however, as pregnancy progresses and begins to get ready for birth, the cervix will soften, efface (shorten) and dilate (open); with women who have an incompetent cervix this process can happen too early. 

As the baby grows larger and heavier the pressure placed on the cervix is increased; in women with an incompetent cervix this can cause premature rupture of the membranes, premature delivery, early preterm delivery (before 32 weeks) and stillbirth. Cervical Incompetence occurs in approximately 1 out of 100 pregnancies.

Symptoms

There may not be any noticeable symptoms of an incompetent cervix; however, some people report having:

  • Mild discomfort
  • Spotting or bleeding
  • Pelvic pressure
  • Backache
  • Mild abdominal cramps
  • A change in vaginal discharge

Risk Factors

  • Previous premature birth
  • Previous miscarriage or stillbirth in the second or third trimester
  • Cervical injury during a previous birth or dilation and curettage (D&C)
  • Several pregnancies terminated
  • You’ve had a cone biopsy or LEEP (Loop Electrosurgical Excision Procedure)

If you’re pregnant and have any risk factors for an incompetent cervix or you experience any symptoms during your second trimester, then speak to your doctor or midwife straight away as you may need urgent medical care.

ic3

Tests and Treatment

When diagnosing an incompetent cervix, the doctor will usually perform an ultrasound. If you’re less than 24 weeks gestation, your cervical opening is more than 2.5 cm, or the length has shortened to less than 20 mm, then the doctor may recommend you have a cervical cerclage (a cervical stitch). This procedure can prevent premature delivery in 85% – 90% of women. The best time to perform a cerclage is between 13 and 16 weeks, before the cervix starts to change.

Cervical cerclage is usually performed using a spinal, or epidural anaesthetic and your doctor will continue to check your cervix regularly for signs of further changes. The stitch is usually removed at around 37 weeks and once the stitch is removed, labour and delivery should proceed normally.

If you’ve had a cervical cerclage and experience any of the following symptoms, call your doctor immediately:

  • Vaginal spotting or bleeding
  • Your amniotic sac begins leaking or breaks
  • You have a temperature over 38°C (100.4°F)
  • You have signs of infection, including chills, a cough, or if you feel weak and achy

 

ic4

There is a fantastic Facebook page which has lots of information about cervical incompetence and is regularly updated. Please visit https://www.facebook.com/CervicalIncompetence/