"If the sickness wasn't there" poem by Matthew Musgrove

This poem was written by Matthew Musgrove for his daughter Charlie Eden who died from Cystic Hygroma, Hydrops and Turners Syndrome. 

I met Matt and his wife Amy over Facebook after we were introduced by a mutual friend when they had received their babies prenatal diagnosis. At the time we were praying that their babies CH would not be as severe as Ava's was and that she would live and come home healthy. This wasn't to be, though she was a fighter and lived weeks longer than the doctor predicted. 

Charli Eden Musgrove 

26.5.15

Length 21cm

Weight 319grams

HC 15cm

Born still at 20+1, passed away in her 19th week. 

Cystic Hygroma is rare so I found it hard to believe that someone that knew about my story also knew of another family going through the same just weeks later. I am glad that I have been able to pray for them and their baby and know that Ava and Charli are playing in Heaven together healthy and grown. 

Thanks Matt for writing such a beautiful poem, your words say so much and I love how you have expressed yourself in this way. 

Rest in peace to another beautiful angel. 

Cystic Hygroma / Lymphatic Malformation Information

This is some information if you want to know more about the devastating condition that Ava had.

I want to start by saying that we have had many people give suggestions and ask questions both before and after Ava died. The most common things we have heard is "can't they just drain the cyst either in utero or after she was born?" and "I've read they just do a surgery to remove the cyst" If it were this simple don't you think we would have done this? So clearly it is not that simple. 

In a nutshell, Ava's lymphatic system did not develop and this puts strain and the rest of the body so that other parts don't work as they should either, mainly the lungs and heart, the lungs can't develop as they should due to fluid and the heart stops working due to fluid and heart failure. Hydrops is common in babies with cystic hygroma. Hydrops basically means fluid accumulates everywhere throughout the body. It is considered "incompatible with life". Hydrops is also a sign/indicator that something is very wrong, it doesn't necessarily have to be cystic hygroma, Hydrops can develop on its own and is also common with other serious conditions.

Of course the severity and location of cystic hygroma differs and there are many babies and people who survive a pregnancy and live with it. Many of those people have multiple surgeries throughout their life and painful treatments. Depending on where it is located it can be disfiguring and can also affect vital organs and structures such as the airways which would mean a tracheostomy to secure the airway and depending on the severity ventilators and other life support machines may be needed to keep the baby / person alive. Surgery can sometimes remove the whole hygroma which means there is a good chance it will not grow back, however a lot of the time complete surgery cannot be completed as it would affect other areas - eg, could paralyse the person etc. 

From what we know about Ava from ultrasounds before and by looking at her after she was born aswell as the initial autopsy report, hers was extensive and as bad as they come.  Babies that make it further in the pregnancy are born by a procedure called an EXIT caesarean at a major specialist hospital - these are done approximately once every 10 years from what I have been told in Australia as it is very rare. It means that the cut is made much larger and before the baby is even completly born (baby is still attached to the placenta ) a team of specialists try to secure an airway and put the baby on life support. It is dangerous for both the mother and baby to be born "naturally". This is often performed by 33-34 weeks gestation as the cysts get larger with the baby and can also put the mother into early labour because of the extra size and weight of it. Mirror syndrome can occur and this means the mother gets very sick aswell. There are other complications aswell that can happen towards the end of the pregnancy too. Women often develop polyhydramnios - too much fluid surrounding the baby. 

Quite often there is a syndrome behind the development of a cystic hygroma. The most common being   Turners Syndrome, Down Syndrome, Edwards Syndrome and Patau Syndrome. Structural defects in the heart can also be a cause. So far we have no idea why Ava developed hers and we probably never will know. At the moment it looks like hers is isolated and for unknown reasons her lymphatic system didn't develop and this caused issues with her little heart and lungs - all being vital to life! The lymphatic system is so important and also has many immune and infection consequences. 

Visually Ava's hygroma grew all the way around her neck, it was up the back of her head and neck and all the way down her back.  

The autopsy report talks about it being posterially and laterally extending to thoracic wall 
laterally. She had bilateral pleural effusions and oedema mediastinum and contents, left superior vena cava with dilated coronary sinus. 

The following link gives some information that's explained in simple terms: obviously for people who live with it. I hate that Ava's was so severe, my poor baby never had a chance.

http://www.gosh.nhs.uk/file/927/download?token=3-sBiNEA

Another link:

3http://www.ncbi.nlm.nih.gov/pubmed/1586333

One of the things I find really hard is not knowing why? Why did she develop it in the first place and why was hers so severe? Why couldn't hers have been the type to resolve or even be managed with treatments. Why on earth would a babies lymphatic system not develop? 

Our family of 5

- Our family of 5-

We received this beautiful ornament statue today in the mail. What a beautiful representation of our family of 5 with Ava surrounded by us all. This will become another treasured item.

Thankyou Jaala, Jen, Selina, Katie, Liz and Cam - another group of friends that I have been doing mummyhood with the past 6 years! 

Torture of a Mother

 Torture of a mother 

Torture is...

- Vomiting every day for months but not be rewarded with a live healthy baby

- Telling your living children their sister isn't coming home to live with them

- Seeing a person who is due at the same time as you often

- Seeing an active baby on ultrasound with an obvious defect

- Having to make horrific decisions 

- Seeing multiple specialists that give no hope for your baby

- Putting on a brace face, daily for weeks and months 

- Listening to women complain about the little things of parenting a perfectly healthy baby

- Driving past the hospital your baby didn't come home from

- Going through a labour knowing your baby is already dead

- Having a silent birth with no baby crying

- Waking up days later with a flat stomach 

- Producing milk that will never feed your baby

- Having uncaring, uneducated doctors say stupid things 

- Having fights with funeral companies 

- Going shopping for a toy for your dead baby at the same time as going birthday shopping for your living child 

- Feeling panic rise as someone asks you the question of how many children you have

- Enduring painful procedures 

- Waiting for answers 

- Being made to wait in hospital waiting rooms full of pregnant people

- Seeing the pity on people's faces as they don't know what to say as they try to get away as fast as they can from the conversation

- People not acknowledging your babies life, name and story

- Your baby not having ever existed legally on this earth

- People giving you their newborn babies to hold only weeks after losing yours without even thinking how it might affect you

- Having one photo album that will never have photos added

- Having to pack away maternity clothes

- Looking at an empty room that was designed to hold your 3rd baby

- Revisiting the ward where your daughter was born still and silent 

- Discussing and trying to understand genetics and medical terminology with specialists

- Pretending to function and be motivated 

- Forgetting details about your baby

- Wishinf you took a certain type of photo

- Making baby clothes that people can hardly believe would ever fit a human being 

- Giving your daughter one last cuddle 

- Seeing and touching your daughters coffin

- Placing your baby in their coffin for the last time

- Walking out of hospital without a baby in your arms 

- The never ending fear that you will never hold a healthy baby in your arms again

Torture is waking up everyday knowing you are one day further from that final cuddle and goodbye.

Well I could keep adding to that list but I'd be here all night. I'm pretty sure I'm in 

that stage of grief that's called ANGER - I hope this is a quick stage because I don't like it :( 

3 nappies in a row

These nappies will be on their way to my local hospital soon. They will receive two, one for their baby to wear and one for their memory box. 

The above nappies are being sent as a keepsake for some lovely families who have been left devastated through early miscarriage.

If you would like to volunteer to sew, crochet or knit this is the link below

https://www.facebook.com/groups/1692090737678771/

NT City2Surf Bears of Hope fundraiser

I am so proud of my twin sister Nicole running in the NT City2Surf. She, just like myself would not consider herself a runner but recently has taken up running to improve her fitness and health. 

She and her team which consisted of herself and her good friends Jessica and Matt Fong raised $1664.86 between them for the Bears of Hope organisation. 

This money will go towards the support services they provide to grieving families who have lost their babies through miscarriage, stillbirth and neonatal loss. 

Nicole ran with Ava's name proudly displayed on her shirt and Jess and Matt had their Sam on their shirts. I love that Ava's name was displayed for all the world to see. What an acknowledgement of her life! 

 

It has inspired myself to take up running - though not sure if I'd be ready for this years Sydney City2Surf! 

Thankyou so much Nicole, Jess and Matt on behalf of myself, Mat and the Bears of hope organisation. 

Lovely surprise gift

 

What a lovely surprise to find this on my doorstep a few months down the track - so nice to know people are still thinking of our Ava and care xxx thanks J!