Help raise awareness of TTTS and our family
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It's taken me many sleepless nights and months to get in a good place to finally write about our story of the hardest year of our families lifes.
I'm wanting to raise awareness of TTTS twin to twin syndrome and how this has affected our family mentally, emotionally, physically and financially.
Help us raise money so we can bring awareness to others on TTTS giving to the maternal fetal departments at our wonderful qld hospitals and to help our family through these hard times.
Our story:
I'll start from the beginning.
My husband and I met 4 years ago in Sydney and had our Son Noah a year after this. It was a smooth pregnancy and I had him naturally no complications. Life was bliss and I felt so lucky to have such a beautiful family. Over a year of discussions between my husband and I we decided to say goodbye to Sydney and move up North to Queensland Sunshine Coast so we could raise our son in a house not an apartment like Sydney and one day have enough money saved to buy our very own house.
We've been up in Qld now for 2 years and none the wiser to us were not aware of how great news could become so dim so quickly in our near future.
Finally in October 2018 My husband and I were happily married, we had booked our first child free holiday (our honeymoon just mummy and daddy), had downgraded a car & saved hard to get enough for a deposit for our very first home and had just found out the wonderful news of being pregnant again.
At 9 weeks we had our first scan and found out its twins wow what a shock but super exciting and at 14 weeks found out they were identical twin girls.
Lots was happening and all very exciting.
Unfortunately this all changed quite suddenly on Christmas eve 2018. I was 16 weeks pregnant with my twin girls going into sunshine coast hospital SCUH when a routine scan of my babies turned into a grim day. I was laying there by myself as was just a quick check up scan when the midwife and dr came in and said "you need to call your husband you wont be going back to work today". I had no clue what was going on as on the scan I had 2 babies kicking and heart beating strong no problems I thought?? Was I wrong!
My husband came in and we waited what felt like forever (mind you I'm also worrying as its Christmas eve will I be home for Santa tonight for our 2 year old). We were told to go immediately to royal brisbane womens hospital maternal fetal medicine department and we had TTTS twin to twin syndrome and needed to be seen asap.
On the drive down from sunshine coast I googled like crazy TTTS possibilities what is was what is happening etc. Its not great news.
We arrived at royal brisbane womens hospital where the most amazing team met us staying back themselves on Christmas eve to explain what was happening and what they were looking for on there scan machines.
We had TTTS twin to twin syndrome. This happens when the placenta has an abnormity causing the cells not to split evenly and is higher in identical twin pregnancies causing one twin to get more than the other. This in turn allows one twin the recipient to get too much causing a heart attack and problems causing death and the other twin the donor to not get enough also leading to death due to lack of blood flow etc to brain body. So the outcome not good at all.
So options were presented to us.
Option 1 an RFA this is a procedure surgery where they freeze and heat the cord of the donor twin to cease anymore flow allowing and hoping that baby recipient evens out and they progress as normal but as a singleton baby only taking enough for one. 70% survival rate for 1 twin only 0% for other
Option 2 Laser surgery where they cut the vessels in between on the placenta in half allowing each baby to get their own amount not too much not to little and for both to have a fighting chance of making it. 50% survival rate both with high chance 1 twin will pass anyways or even both. But still a chance at having both twins.
Option 3: Do nothing wait let nature do its stuff survival chance for both babies is . 0%
My husband and I went with option 2 give both babies a chance and had follow up scans a few times a week until we could hopefully reach 18 weeks where the surgery has better odds and vessels are larger. Unfortunately one of these scans a MRI showed that within just a mere few days by NYE that baby B the donor had black covering their little brain due to the stress and was going to not survive once outside the womb or possibly inside too. But doing nothing still meant and losing baby A the recipient twin.
We had no option but to quickly make a decision and have option 1 surgery to save baby A before it was to late. (This was the hardest thing we've had to do in our life say goodbye to our baby who I feel kick and love with all our hearts already.)
We had the surgery and watched as her little heart stopped beating and prayed now that her sister twin makes it through as the first 24hrs after any utero surgery survival rates are low for baby but once over this period dramatically increase. So we prayed and we hoped and cried that she would make it. Once we got over this period we were sent home to rest.
Once I was home I was put on bed rest for a month still travelling back and forth to brisbane from sunshine coast for scans and check ups weekly These are to check baby is going ok getting enough not to much and brain and body is growing functioning on track. Also high chance after surgery of miscarry and complications due to surgery and waters breaking having her very premie. Costing us at min $60 a trip with petrol parking and tolls at least twice a week at this stage.
This doesnt include the now lack of 1 income we have as I'm not working been on bed rest and have used all annual leave sick leave. Yet outgoing Bill's childcare rent etc remain the same. And so we had to take out of our savings and cancel the honeymoon (no first holiday for mummy daddy :-( ) and use this to cover living costs and Bill's too.
Also at this same time our private health insurance knocked back paying for our 2 year old sons grommets adnoids surgery he had and we had to fork out for this as well. A mere $5000 + some
It was a real hit on our plans now .
No house. No savings. No honeymoon. No feeling like a newly wed ever. No twin baby girls.
but we will always put our family first and medically especially there is no cost price on what your child /children need and they will always come first in my husband and my eyes.
After my time off on bed rest the dr has finally given me a clearance to work again but only 4 hours a day for the remainder if the pregnancy limited duties only. As I'm still high risk pregnancy and now we've also found out our babies umbilical cord isn't attached properly its to the side not into the placenta which is another thing to be careful about. But some work is better than none and will help cover some Bill's like food and childcare.
But still it's been hard on our family. Emotionally
Hitting us for a 6. Physically exhausting. And hitting us financially.
Now we just hope and pray our baby girl keeps growing strong at 31 weeks now and hopely can make it to our goal of max 36weeks to come out c section at SCUH and I'll actually be able to hold her. But this day will also be one of grief for us.
As our family will again go through a day of loss and there is nothing to prepare us for this but its something my husband and I will do together and for our family staying strong.
Because our twin girls are identical in order to save our baby girl from dying even though her sister didnt survive I've had to carry both babies the whole pregnancy they cannot remove one as they share a placenta and this then would cause death to the other. So on my delivery day I will be delivering one baby alive and one stillborn. 2 emotions one shouldnt have to deal with at the same time but we will and I have my husband who keeps me strong.
We've been told to stay strong and that we have been strong which I feel as a mother you have to be one for my now 3 yr old son and also for my baby kicking away inside growing each day. But I couldnt have got this far without the help and the support of the team at maternal fetal medicine in brisbane royal womens hospital and to the team now at Sunshine coast hospital fetal medicine where we have been transferred too. And also my husband his been working overtime most evenings to help cover costs and has been my rock through all of this amazing with our son always and caring being there for his wife me I couldnt have asked for a better man.
And so I ask on GoFUND me to help raise money so I can bring awareness to others on TTTS give donations to the maternal fetal departments at our wonderful qld hospitals for training and resources and to help our family and others like us in times of need.
So if anyone has anything and would like to donate to TTTS twin to twin transfusion syndrome awareness, our maternal hospitals or to our family or others in need. Would muchly be appreciated.
Thank you in advance.
Alittle side note:
Normal obsebtricians and midwives aren't up to speed on the knowledge required to know about what we've been through as it's a speciality and they are not aware of the surgeries needed to help.
TTTS isn't known enough and should be as knowing what signs can save both your babies or one and having the people and medical professionals whom can help you through this close to home can make a massive difference on recovery and your lives. So let's raise funds to help these amazing people bring awareness to others having twins or who are going through TTTS.
Update on baby:
As time progressed our baby has had her ups and downs some worse than others but I can happily say at the moment I am 31 weeks pregnant still with our baby girl who is growing healthy and strong. Fingers crossed and pray she comes out healthy and safe when she is supposed to soon.
I'm wanting to raise awareness of TTTS twin to twin syndrome and how this has affected our family mentally, emotionally, physically and financially.
Help us raise money so we can bring awareness to others on TTTS giving to the maternal fetal departments at our wonderful qld hospitals and to help our family through these hard times.
Our story:
I'll start from the beginning.
My husband and I met 4 years ago in Sydney and had our Son Noah a year after this. It was a smooth pregnancy and I had him naturally no complications. Life was bliss and I felt so lucky to have such a beautiful family. Over a year of discussions between my husband and I we decided to say goodbye to Sydney and move up North to Queensland Sunshine Coast so we could raise our son in a house not an apartment like Sydney and one day have enough money saved to buy our very own house.
We've been up in Qld now for 2 years and none the wiser to us were not aware of how great news could become so dim so quickly in our near future.
Finally in October 2018 My husband and I were happily married, we had booked our first child free holiday (our honeymoon just mummy and daddy), had downgraded a car & saved hard to get enough for a deposit for our very first home and had just found out the wonderful news of being pregnant again.
At 9 weeks we had our first scan and found out its twins wow what a shock but super exciting and at 14 weeks found out they were identical twin girls.
Lots was happening and all very exciting.
Unfortunately this all changed quite suddenly on Christmas eve 2018. I was 16 weeks pregnant with my twin girls going into sunshine coast hospital SCUH when a routine scan of my babies turned into a grim day. I was laying there by myself as was just a quick check up scan when the midwife and dr came in and said "you need to call your husband you wont be going back to work today". I had no clue what was going on as on the scan I had 2 babies kicking and heart beating strong no problems I thought?? Was I wrong!
My husband came in and we waited what felt like forever (mind you I'm also worrying as its Christmas eve will I be home for Santa tonight for our 2 year old). We were told to go immediately to royal brisbane womens hospital maternal fetal medicine department and we had TTTS twin to twin syndrome and needed to be seen asap.
On the drive down from sunshine coast I googled like crazy TTTS possibilities what is was what is happening etc. Its not great news.
We arrived at royal brisbane womens hospital where the most amazing team met us staying back themselves on Christmas eve to explain what was happening and what they were looking for on there scan machines.
We had TTTS twin to twin syndrome. This happens when the placenta has an abnormity causing the cells not to split evenly and is higher in identical twin pregnancies causing one twin to get more than the other. This in turn allows one twin the recipient to get too much causing a heart attack and problems causing death and the other twin the donor to not get enough also leading to death due to lack of blood flow etc to brain body. So the outcome not good at all.
So options were presented to us.
Option 1 an RFA this is a procedure surgery where they freeze and heat the cord of the donor twin to cease anymore flow allowing and hoping that baby recipient evens out and they progress as normal but as a singleton baby only taking enough for one. 70% survival rate for 1 twin only 0% for other
Option 2 Laser surgery where they cut the vessels in between on the placenta in half allowing each baby to get their own amount not too much not to little and for both to have a fighting chance of making it. 50% survival rate both with high chance 1 twin will pass anyways or even both. But still a chance at having both twins.
Option 3: Do nothing wait let nature do its stuff survival chance for both babies is . 0%
My husband and I went with option 2 give both babies a chance and had follow up scans a few times a week until we could hopefully reach 18 weeks where the surgery has better odds and vessels are larger. Unfortunately one of these scans a MRI showed that within just a mere few days by NYE that baby B the donor had black covering their little brain due to the stress and was going to not survive once outside the womb or possibly inside too. But doing nothing still meant and losing baby A the recipient twin.
We had no option but to quickly make a decision and have option 1 surgery to save baby A before it was to late. (This was the hardest thing we've had to do in our life say goodbye to our baby who I feel kick and love with all our hearts already.)
We had the surgery and watched as her little heart stopped beating and prayed now that her sister twin makes it through as the first 24hrs after any utero surgery survival rates are low for baby but once over this period dramatically increase. So we prayed and we hoped and cried that she would make it. Once we got over this period we were sent home to rest.
Once I was home I was put on bed rest for a month still travelling back and forth to brisbane from sunshine coast for scans and check ups weekly These are to check baby is going ok getting enough not to much and brain and body is growing functioning on track. Also high chance after surgery of miscarry and complications due to surgery and waters breaking having her very premie. Costing us at min $60 a trip with petrol parking and tolls at least twice a week at this stage.
This doesnt include the now lack of 1 income we have as I'm not working been on bed rest and have used all annual leave sick leave. Yet outgoing Bill's childcare rent etc remain the same. And so we had to take out of our savings and cancel the honeymoon (no first holiday for mummy daddy :-( ) and use this to cover living costs and Bill's too.
Also at this same time our private health insurance knocked back paying for our 2 year old sons grommets adnoids surgery he had and we had to fork out for this as well. A mere $5000 + some
It was a real hit on our plans now .
No house. No savings. No honeymoon. No feeling like a newly wed ever. No twin baby girls.
but we will always put our family first and medically especially there is no cost price on what your child /children need and they will always come first in my husband and my eyes.
After my time off on bed rest the dr has finally given me a clearance to work again but only 4 hours a day for the remainder if the pregnancy limited duties only. As I'm still high risk pregnancy and now we've also found out our babies umbilical cord isn't attached properly its to the side not into the placenta which is another thing to be careful about. But some work is better than none and will help cover some Bill's like food and childcare.
But still it's been hard on our family. Emotionally
Hitting us for a 6. Physically exhausting. And hitting us financially.
Now we just hope and pray our baby girl keeps growing strong at 31 weeks now and hopely can make it to our goal of max 36weeks to come out c section at SCUH and I'll actually be able to hold her. But this day will also be one of grief for us.
As our family will again go through a day of loss and there is nothing to prepare us for this but its something my husband and I will do together and for our family staying strong.
Because our twin girls are identical in order to save our baby girl from dying even though her sister didnt survive I've had to carry both babies the whole pregnancy they cannot remove one as they share a placenta and this then would cause death to the other. So on my delivery day I will be delivering one baby alive and one stillborn. 2 emotions one shouldnt have to deal with at the same time but we will and I have my husband who keeps me strong.
We've been told to stay strong and that we have been strong which I feel as a mother you have to be one for my now 3 yr old son and also for my baby kicking away inside growing each day. But I couldnt have got this far without the help and the support of the team at maternal fetal medicine in brisbane royal womens hospital and to the team now at Sunshine coast hospital fetal medicine where we have been transferred too. And also my husband his been working overtime most evenings to help cover costs and has been my rock through all of this amazing with our son always and caring being there for his wife me I couldnt have asked for a better man.
And so I ask on GoFUND me to help raise money so I can bring awareness to others on TTTS give donations to the maternal fetal departments at our wonderful qld hospitals for training and resources and to help our family and others like us in times of need.
So if anyone has anything and would like to donate to TTTS twin to twin transfusion syndrome awareness, our maternal hospitals or to our family or others in need. Would muchly be appreciated.
Thank you in advance.
Alittle side note:
Normal obsebtricians and midwives aren't up to speed on the knowledge required to know about what we've been through as it's a speciality and they are not aware of the surgeries needed to help.
TTTS isn't known enough and should be as knowing what signs can save both your babies or one and having the people and medical professionals whom can help you through this close to home can make a massive difference on recovery and your lives. So let's raise funds to help these amazing people bring awareness to others having twins or who are going through TTTS.
Update on baby:
As time progressed our baby has had her ups and downs some worse than others but I can happily say at the moment I am 31 weeks pregnant still with our baby girl who is growing healthy and strong. Fingers crossed and pray she comes out healthy and safe when she is supposed to soon.
Organizer
Chay Slattery
Organizer
Shelly Beach QLD
