Hanging on by a thread

I feel overwhelmed with sadness right in this very moment.

My eyes are heavy, my bones are tired and I feel drained.

Emotionally, physically, mentally exhausted.

Hanging on by a thread.......

 

I can't bare to part with......

There is a small collection of tiny, beautiful, precious items that I can't bare to part with. They were intended for our first daughter Yasminah.

We couldn't wait to find out if we were having a little boy or a little girl, even though deep down in my soul I knew that it was a girl! After having a boy, it was going to be nice to buy 'pink' but we were told that there was something wrong with our baby, before being asked if we still wanted to know what we were having. Of course we did! We loved this child from the moment we knew a new life had been gifted to us. No one ever truly knows how long their stay here on earth is for, and even despite all that we were told we left the decision in God's hands.

Time has passed. Things have changed. We have been blessed with 2 beautiful, strong and healthy little girls.

In the early days of my grief, I was so angry. So angry that she would never get to wear the clothes that I picked out, washed, hung to dry and gently folded before placing in her nursery. I wanted to get rid of everything. I wanted the nappies gone, the cradle gone, the clothes gone. Why would I need to keep them when the one reason all of those items existed was also......gone. My daughter wasn't here to hold in my arms, or to rock to sleep. She wasn't here to use the rocking chair at 2am feeds. She wasn't here to change her nappy, we would never get to change her nappy. These are the things you think about. I became angry at the world because my daughter was gone, my hopes and dreams vanished. Sure we knew it was going to be hard. It was going to be really hard! But she was our daughter and maternal instinct takes over.

A very good friend sat me down and said that I shouldn't be so eager to give her things away. There was no rush. There was plenty of time to decide if I wanted to keep them. Perhaps we would have another baby. It made sense. We had kept plenty of our son's clothing and other baby items in the hopes that a sibling would one day use them. Why should this be any different?

I changed my mind and I kept them.


I kept the special outfit I purchased as her 'coming home' outfit. A cute little Mummy and Daddy Love Me set! It was perfect.

I kept the little piglet snuggly blanket that a very kind friend had bought for her.

I kept the cute pink and white 'Little Sister' socks we bought as a gift from her big brother.

I kept the beautiful soft, white, fur vest that was going to keep her warm during a cold winter. It was a gift from my nan. A gift she thought her great, granddaughter would wear.

I kept them all and I can't bare to part with them.......and that's ok.

The difference

When we found out that our daughter had limb differences, I searched for other families, other children that had similar differences. I wanted to connect with these families, find out how they had felt during their pregnancy, handled the arrival of their child, other people's reactions, things that had helped them and what had been supportive on their journey.

The hospital were fantastic and referred us to a genetic specialist, who then arranged for us to see a genetic counsellor. Our counsellor was lovely, very understanding and supportive of our decision to continue our pregnancy. The hospital arranged for us to meet with Limb Specialists at the Children's Hospital during the pregnancy. We met with Professors and Surgeons and were handed prosthetics that our daughter might one day want or need to use. We discussed adapting her clothing to suit her difference. Carefully selecting clothes that we could easily alter the sleeves. Dresses instead of pants to accommodate the cast that would be placed on her little foot when she was born to correct her club foot. We wondered how she would eat, use a fork or spoon, hold a cup to drink. Would she be able to ride a bike? How would we explain her differences to our family, her brother, our friends? Would she still be able to attend mainstream schooling? It was completely overwhelming, but we wanted to prepare ourselves and understand what options and support were available and give our baby girl the best possible start in life.

One thing we wanted was to meet other families. Our counsellor mentioned one group the name of which I don't recall, but they had no support groups in our area. There was no website or forum that supported families who were expecting a child with a congenital abnormality, especially a limb difference. I was lucky that I met a lady by pure chance after a Facebook search, whose daughter also had limb differences and she lived locally. She was starting an organisation called CHILD - Children Having Infant Limb Differences to help families like us that were faced with a 'different' outcome than a normal pregnancy. I felt relieved, connected and so grateful. We exchanged emails and then messages via Facebook. We both embraced our daughters difference's and were sure that our daughter's would become life long friends. As Yasminah grew in my womb, my friendship with Katherine grew. I shared her passion of wanting to help provide a supportive place for new families who were diagnosed with a congenital limb difference during pregnancy or after birth. From our personal experiences we envisioned supporting and guiding families through friendship and educating the community about limb deficiency. Katherine was also working on her book and I was honoured to be asked to contribute Yasminah's story.


Whilst it was mentioned during my pregnancy that the Dr's weren't sure 'what the outcome would be for our baby' no one ever mentioned that our baby could die in utero. We were preparing for a life. For her life. The exciting, wonderful life of our second child, our first little girl. It wasn't the dream we envisioned, but the difference to the eventual reality was unfathomable. We dreamed of a life.

I will never forget receiving a message from Katherine asking if Yasminah had arrived yet. Katherine kindly offered me her little girls clothes that she had outgrown. Heartbroken I had to tell Katherine that Yasminah had passed away unexpectedly in utero a few days before.

Katherine still wrote and published her book called 'Our Little Miracles' and she very kindly dedicated the book to Yasminah. I was too distraught to contribute her story, but I'm so very grateful that Katherine still included Yasminah as one of 'our little miracles'. Yasminah is our little miracle. Her story needs to be told. There are approximately 1 in 10,000 children across Australia each year born with a limb deficiency. Sadly sometimes families like mine, don't get to take their little miracle home. There is now a variety of support groups for families that experience limb deficiency. CHILD provide support to parents when they find out about their newborns limb differences. The deficiency can be diagnosed through ultrasound or after birth of the child. Also if the limb loss was acquired through surgical amputation. Through their extensive network of members from throughout the world, the parents never fall short of someone to talk to. This is a beautiful thing! What a difference time can make.

I was honoured to make some very special friends along the way. My CHILD friends are still an important part of my life. I'm honoured that they still involve me in their community and feel blessed to see a small glimpse into their world. I often wonder what our lives would be like if Yasminah was here. If she had of had a chance to the live the life that we dreamed of her having. The child we had, but never had and yet will have forever!

Multiple Birth Awareness

Multiple Birth Awareness Week (MBAW) is a national event held annually to celebrate the joy of parenting multiples and also to educate communities and professionals about the joys and challenges of parenting twins, triplets and more.

The week extends from Sunday 10th to Sunday 17th March 2013 with events and celebrations happening throughout the week. I encourage you to join Australian Multiple Birth Association and Multiple Birth Parents - www.multiplebirthparents.com pages to join in the celebrations.

For further details please visit www.amba.org.au

Stillbirth

We expect to lose our parents. When they die, a huge piece of our past dies with them. But when a child is stillborn, regardless of the reason, a huge chunk of our future is lost. The dreams we had. The joy they would have given us had they lived. The reward of raising them. These all die too.

The late Gilda Radner, in the face of her impending death, summed it up pretty well when she wrote….

“I wanted a perfect ending. Now I’ve learned the hard way that some poems don’t rhyme and some stories don’t have a clear beginning, middle and end. Life is about not knowing, having to change, taking the moment and making the best of it, without knowing what is going to happen next. Delicious ambiguity.”

Don’t we all want perfect endings to our stories, for our children’s futures? Most mothers get them. Others have to create them from the tapestry life weaves for us. Death alone cannot defeat us, only we can do that. Link your hearts together and hold on tight. It’s how you can deal with death, the loss of your child. Alone we’re vulnerable. But as one we’re powerful. Beyond pain and suffering, there is light. And the promise of a better day.

When parents hear the heartbreaking news that their baby has died in the womb, their grief can be overwhelming. In a few brief moments, they go from happy anticipation of their baby’s birth to the intense pain of confronting his death.

When fetal death occurs after 20 weeks of pregnancy, it is called stillbirth. These tragic deaths occur in about 1 in 160 pregnancies. Most stillbirths occur before labor begins. The pregnant woman may suspect that something is wrong if the fetus suddenly stops moving around and kicking. A small number of stillbirths occur during labour and delivery.

If your child was born sleeping, please read the following.

Dealing with the death of your baby may be one of the most painful experiences in your life. Everyone copes and mourns differently. Perhaps a few of the following suggestions can help you survive some of the difficult times.

• Take care of yourself. Eat well. Get plenty of rest. Stay well physically so that you can continue to heal emotionally.
• Express yourself. Talk about your baby, your feelings, your fears, your grief. Or keep a diary, write a journal, create, start a flower garden. This may help you to see things more clearly.
• Read written resources. There are many books, articles, poems, and videos that can provide information, guidance, and support.
• Find a support network. Such a network may be your family, your friends, or your faith community. You may want to contact a support group for parents who have experienced the death of a baby, to share your story and feelings and to learn from others who have also “been there”.
• Above all, give yourself time. Be patient. You will never forget your baby, but you will heal. Healing is an ongoing process; it does not happen overnight. But it will happen.

“some people only dream of angels, you actually got to hold one.”

How is fetal death diagnosed?

An ultrasound examination (a test that uses sound waves to take a picture of the fetus) can confirm that the fetus has died by showing that the fetus’s heart has stopped beating. It sometimes can help explain why the fetus died. The health care provider also can do some blood tests on the woman to help determine why the fetus died.

How is the pregnant woman treated?

The health care provider discusses options for delivering the fetus. Some women may need to deliver immediately for medical reasons.

However, many couples can decide when they want to deliver the fetus. Some choose to wait until the woman goes into labour. Labour usually starts within two weeks after the fetus dies. Waiting for labor generally poses little risk to a woman’s health. If labour has not begun after two weeks, providers recommend inducing labour because there is a small risk of developing dangerous blood clots after this time.

Most couples choose to have labour induced soon after they learn of their baby’s death. If the woman’s cervix has not begun to dilate in preparation for labour, the provider may use vaginal medicine to help prepare her cervix. She is then treated with the hormone oxytocin (also called Pitocin), which is given through a vein. Oxytocin stimulates uterine contractions. Generally, a woman does not need a cesarean unless she develops problems with labor and delivery.

What tests are done after the fetus is delivered?

After delivery, the fetus, placenta and umbilical cord are examined carefully to help determine why the fetus died. The provider often recommends an autopsy and tests to diagnose common chromosomal problems. In some cases, the provider recommends tests for specific disorders or various infections.

In up to half of all cases, these tests cannot determine the cause of stillbirth. However, information from these tests often is useful in helping couples plan a future pregnancy, even if the cause of the stillbirth remains unknown.

Can stillbirths be prevented?

Since the 1950s, stillbirths have declined dramatically. The decline is largely due to better treatment of certain conditions, such as maternal high blood pressure and diabetes, which can increase the risk of stillbirth. Today, women with well-controlled diabetes and high blood pressure face little increased risk of stillbirth.

Rh disease was an important cause of stillbirth until the 1960s. Now it usually can be prevented by giving an Rh-negative woman an injection of immune globulin at 28 weeks of pregnancy and again after the birth of an Rh-positive baby.

Women with high-risk pregnancies (including those with high blood pressure and diabetes) are carefully monitored during late pregnancy, usually starting by about 32 weeks. Tests that monitor the fetal heart rate often can tell if the fetus is in trouble. This can allow treatment, sometimes including early delivery, which can be lifesaving.

Health care providers often suggest that high-risk pregnant women do a daily “kick count” starting around 28 weeks of pregnancy. One approach is to record how long it takes a fetus to make ten movements. It is reassuring if a fetus makes ten movements within two hours. If a woman counts fewer than ten kicks in two hours, or if she feels that the baby is moving less than usual, she should contact her health care provider. Her provider may recommend tests, such as fetal heart rate monitoring and ultrasound.

Pregnant women should report any vaginal bleeding to their health care provider immediately. Vaginal bleeding during the second half of pregnancy can be a sign of placental abruption. Often, a prompt cesarean delivery can save the baby.

Providers carefully monitor women who have had a stillbirth in a previous pregnancy for any signs of fetal difficulties. This can help assure that all necessary steps can be taken to prevent another fetal death.

What can a woman do to reduce her risk of stillbirth?

Women should have a preconception visit with their health care provider. This visit allows the provider to identify and treat conditions, such as diabetes and high blood pressure, before pregnancy to reduce the risks of problems during pregnancy. This visit also is a good time to discuss all prescription, over-the-counter and herbal medications with their provider because some medications can pose a risk to the fetus.

Obesity may increase a woman’s risk of stillbirth. Women who are obese should consider losing weight before they attempt to conceive. Their health care provider can discuss their ideal weight and how they can achieve it. A woman should never try to lose weight during pregnancy. However, women who are obese should not gain as much weight during pregnancy as women who are not overweight.

Women should not smoke, drink alcohol or use street drugs during pregnancy. All of these can increase the risk of stillbirth and other pregnancy complications.

What is the risk of stillbirth happening again in another pregnancy?

Parents who have had a stillbirth often are worried about this tragedy happening again. The risk is low for most couples, though the risk is higher than for couples who have not had a stillbirth. For example, chromosomal birth defects, placental problems and cord accidents are unlikely to occur again in another pregnancy.

However, the risk for having another stillbirth may be higher if a maternal health condition (such as diabetes) or a genetic disorder caused the previous stillbirth. In such cases, the couple may benefit from genetic counseling. A genetic counselor can advise the couple about the risk of stillbirth or other pregnancy complications in another pregnancy.

Any couple who has had a stillbirth should discuss their risk of stillbirth with their health care provider before getting pregnant again. In some cases, the woman and her health care provider can take steps to reduce her risk in another pregnancy. For example, if a woman has diabetes or high blood pressure, she can get the condition under good control before she tries to conceive.

How do parents cope with their grief?

A couple who has had a stillbirth needs time to grieve. Parents form a bond with their child long before birth, so they may feel intense loss when their unborn baby dies. Each person experiences loss differently. Parents may experience many emotions, including shock, numbness, denial, deep sadness, guilt, anger and depression.

A woman and her partner may cope with their grief in different ways. This sometimes creates tension between them when they need each other most. It may be helpful to ask a health care provider for a referral to a counselor who is experienced in dealing with pregnancy loss.

Some couples also find it helpful to join a support group for parents who have experienced pregnancy loss. In such a group, they can share their feelings with others who truly understand what they are going through. This often helps them feel less alone.

I received a message from a mother whose child was born still, she had club foot and a heart defect. She told me that she keeps little Rachael close to her by wearing a signet ring, which has her daughters name and date of birth/death engraved into it. She wears it everyday and feels as though her daughter is with her every day. Perhaps this is a good action to take as a parent of a child born sleeping.

Resources

• Kindred – 8:04 am, Friday, 26 August 2005. Four days after his due-date and our darling son, Bryn, is stillborn. He is perfect in every way. The shock is sudden, massive, and overwhelming.http://www.kindredmedia.com.au/library_page1/still_born/423/1
• Law Handbook -http://www.lawhandbook.sa.gov.au/ch38s04s07.php
• NSW Health -http://www.health.nsw.gov.au/pubs/2007/pdf/post_mortem_1.pdf

*Wikipedia’s Definition of Stillbirth - http://en.wikipedia.org/wiki/Stillbirth (Relevant exerts of this article are below.)

*A stillbirth occurs when a fetus which has died in the uterus or during labor or delivery, while exiting a woman’s body. The term is often used in distinction to live birth or miscarriage. Most stillbirths occur in full term pregnancies.

Some sources reserve the term “stillbirth” for a fetus which has died after reaching mid-second trimester to full term gestational age. For example, in the United Kingdom, “stillbirth” is used to describe an infant birthed without life after 24 weeks gestation. The sources that use this definition tend to use the term “miscarriage” if the death occurs earlier in development. In contrast, other sources use the term “stillbirth” regardless of the stage of fetal development.

Human stillbirth

Causes

The causes of a large percentage of human stillbirths remain unknown, even in cases where extensive testing and autopsy have been performed. A rarely used term to describe these is sudden antenatal death syndrome or SADS.

In cases where the cause is known, some possibilities of the cause of death are:

• bacterial infection
• birth defects
• chromosomal aberrations
• growth retardation
• Intrahepatic Cholestasis of Pregnancy
• maternal diabetes
• high blood pressure, including pre eclampsia
• maternal consumption of nicotine, alcohol, recreational drugs (excluding cannabis[2]), or pharmaceutical drugs contraindicated in pregnancy
• Postdate pregnancy
• placental abruptions
• physical trauma
• radiation poisoning
• Rh disease
• umbilical cord accidents

Umbilical Cord Accident

• “Prolapsed umbilical cord” – Prolapse of the umbilical cord happens when the fetus is not in a correct position in the pelvis. Membranes rupture and the cord is pushed out through the cervix. When the fetus pushes on the cervix, the cord is compressed and blocks blood and oxygen flow to the fetus.
• The mother has 10 minutes to get to a doctor before there is any harm done to the fetus. • “Monoamniotic twins” – These twins share the same placenta and the same amniotic sac and therefore can interfere with each other’s umbilical cords. When entanglement of the cords are detected, it is highly recommended to deliver the fetuses as early as 31 weeks.
• Umbilical cord length – A short umbilical cord (20 cm) can affect the fetus in that fetal movements can cause cord compression, constriction and ruptures. A long umbilical cord (over 70 cm) can affect the fetus depending on the way the fetus interacts with the cord. Some fetuses grasps the umbilical cord but it is yet unknown as to whether a fetus is strong enough to compress and stop blood flow through the cord. Also, an active fetus, one that frequently repositions itself in the uterus can cause entanglement with the cord.
• Cord entanglement – The umbilical cord can wrap around an extremity, the body or the neck of the fetus. When the cord is wrapped around the neck of the fetus it is called a nuchal cord. Again, these entanglements can cause constriction of blood flow.
• Torsion – This term refers to the twisting of the umbilical around itself. Torsion of the umbilical cord is very common but it is not a natural state of the umbilical cord.

Sometimes a pregnancy is terminated deliberately during a late phase, for example for congenital anomaly. UK law requires these procedures to be registered as “stillbirths”. If a fetus is aborted late during pregnancy this is called feticide.

Prenatal diagnosis

It is unknown how much time is needed for a fetus to die but it is believed that most fetuses die slowly. Fetal behavior is consistent and a change in the fetus’ movements or sleep-wake cycles can indicate fetal distress. A decrease or cessation in sensations of fetal activity may be an indication of fetal distress or death, though it is not entirely uncommon for a healthy fetus to exhibit such changes, particularly near the end of a pregnancy when there is considerably little space in the uterus for the fetus to move about. Still, medical examination, including a non stress test, is recommended in the event of any change in the strength or frequency of fetal movement, especially a complete cease; most midwives and obstetricians recommend the use of a kick chart to assist in detecting any changes. Fetal distress or death can be confirmed or ruled out via fetoscopy/doptone, ultrasound, and/or electronic fetal monitoring. If the fetus is alive but inactive, extra attention will be given to the placenta and umbilical cord during ultrasound examination to ensure that there is no compromise of oxygen and nutrient delivery.

Prenatal maternal treatment

An in utero stillbirth does not usually present an immediate health risk to the woman and labour will usually begin spontaneously after two weeks, so the woman may choose to wait and birth her baby vaginally. After two weeks, the woman is at risk of developing blood clotting problems, and induction is recommended at this point. In many cases, the woman will find the idea of carrying the dead baby emotionally traumatizing and will elect to be induced. Cesarean birth is not recommended unless complications develop during vaginal birth.

Prevalence

Stillbirth is a relatively common, but often random, occurrence. The mean stillbirth rate in the United States is approximately 1 in 115 births, which is roughly 26,000 stillbirths each year, or on an average one every 20 minutes. In Australia, England, Wales, and Northern Ireland, the rate is approximately 1 in every 200 births, in Scotland 1 in 167. (From The National Statistical Office and other sources.) Many stillbirths occur at full term to apparently healthy mothers, and a postmortem evaluation reveals a cause of death in only about 40% of autopsied cases. In developing countries, where medical care can be of low quality or unavailable, the stillbirth rate is much higher.

Legal definitions of stillbirth Australia

In Australia any stillborn baby weighing more than 400 grams, or more than 20 weeks in gestation, must have its birth registered.

References: *http://en.Wikipedia.org/wiki/Stillbirth – Wikipedia’s Definition of Stillbirth