TTTS Parent Stories: Paige Maree and Amy Kate
During my first pregnancy with my son Matt I was diagnosed with an incompetent cervix at 24 weeks pregnant then underwent an emergency vaginal cerclage. Our situation was very serious as babies born at 24 weeks only had a 50% chance of survival. Of those that survived a high percentage were left with permanent disabilities. Fortunately with the help of 11 weeks of bed rest I delivered Matt at 35 weeks, Easter Sunday 2002. More trouble appeared at his delivery when the cord prolapsed, we very nearly lost our son all over again. Matt had been manually held of his cord for almost an hour before the doctor arrived and performed an emergency c-section. Born blue and floppy with an Apgar score of 1 - Matt was in serious trouble. By the time I came out of the anesthesia, Matt had been resuscitated and prepared for transfer to another hospital with a higher-level neonatal unit. I was given a photo of Matt as my first glimpse, but pleaded with them to let me see him before he left. I vaguely remember them bringing him past my bed and letting me put my had in the incubator. So there I was, just delivered my baby, he was in one hospital I was in the other and I didn’t know whether he would live or die. Matt was returned to us the next day and we realised we had been blessed when they told us he had recovered well, however they wouldn’t know about long term effects like blindness, hearing loss or motor skill problems until he approached his milestones. Thankfully Matt is now a walking, talking toddler with no apparent affects from his dramatic delivery. I thank god regularly for the gift of our beautiful son.
My husband Scott and I were keen to have our children close together so when Matt was 8 months old we started trying again. Just three months later just like when I fell pregnant with Matt I discovered I was pregnant, Matt was 11 months old.
7 wks 3 days
We went for our first scan. I can remember lying there and thinking if you tell me its twins I won’t be disappointed. It was my childhood dream to have identical twins and that day at our scan my dream came true, when the sonographer said “do you have twins in your family”. The sonographer was fairly sure they were identical twins as it looked like they shared one placenta, I was totally ecstatic and started giggling, Scott had gone white and was sitting there with his mouth wide open. I was so excited and so scared, excited to be having twins and scared as I knew from my previous pregnancy things weren’t going to be easy. By the time we left Scott and I were so excited that we started phoning people as soon as we left the scan.
The following week we went away for a few days to Coolum Beach for some rest and relaxation. Everything felt fine until the day we were due to leave when I discovered I was bleeding. I went straight to panic mode and was sure this meant our babies were gone. We came home early and went to see our obstetrician for a check up. He did a scan and I was totally relieved to see to perfectly formed little babies with perfectly beating little hearts. I could go back to being ecstatic.
12 wks
We went for the Nuchal Translucency Test to determine if the babies were at a high risk of having chromosomal abnormalities. The obstetrician was keen for this to all be ok before he went ahead with the surgery. I was just keen to see my little ones on the scan again. Those scans what can I say, seeing one baby on a scan is an absolute miracle, seeing two babies is out of this world. I could sit there and watch my babies forever. Both babies checked out just fine, and we got a video with them wiggling around. It will be great to show them the video when they are older.
13 wks and 5 days
My days had been passing by in a blur of excitement and euphoria. Then on a Saturday night a few days before I was scheduled to have a preventative cerclage placed I woke up in the middle of the night to feel trickling between my legs. I went to the bathroom and was shocked to find that I was bleeding. When I went to wake Scott up I could see a small pool of blood on the bed and was sure I would find at least one of our babies laying there on the bed as I felt around in the dark. Our babies must surely be gone. On arriving at the hospital two heartbeats were heard, but this was not reassuring enough for me. After a long and lonely night the on call OB took me up to his rooms for a scan and saw that both babies looked healthy and he felt that I was probably having a bleed from the placenta which would settle. I phoned Scott to tell him the good news and felt relieved and confident, we can start celebrating our twins again. I was on strict bed rest until my surgery the following week.
14 wks and 1 day
The surgery went ahead and everything went really well. I was discharged a couple of days later.
15 wks to 18 wks
Things continued along nicely with my belly growing rapidly, I could not stop imagining what life was going to be like with these two precious little babies joining our family. I told anyone and everyone that I was having twins and loved seeing the expression on people’s faces when I told them. I felt special when I was pregnant anyway but when your having twins its doubly so. I gave up work to allow for more rest and booked Matt into childcare two days a week to also enable me to have some quality rest time for the babies. I didn’t like sending him and he didn’t like going, but as much as I needed to consider what was best for Matt, I needed to also consider the health and safety of our twins.
19 wks and 4 days
The day we find out the sex of our babies. I’ve been really impatient as we were supposed to have the scan a few days ago with my usual sonographer but we changed to the one who did my scan at 14 weeks, as he seemed really nice and very reassuring. Both babies looked really good, with one measuring slightly ahead of average and the other slightly below average. I asked about Twin-to-Twin Transfusion (TTTS) but was told there were no signs of anything along those lines. I was quite concerned as I’d done some research and new we were in the risk group in that our twins were monochorionic/diamniotic. This means they shared a placenta with a separating membrane between them. The big news of the scan was that we were expecting identical twin girls. I was totally blown away as I was sure I’d have boys. I remember looking at the scan when the doctor had that area on the screen. Having seen what a boy looked like I was positive that it didn’t look like a boy and I said “they’re girls aren’t they?” He said are you sure you want to know and we were like yes and he said, “yep their girls”. I couldn’t believe it. I had an internal scan, which frightened me, as I was always concerned about anything that may assist any type of infection into my vagina. This became the downer as he discovered that my cervix had shortened down to the stitch. He was still confident that everything would be fine, but I was really worried, I felt quite sick. The doctor scheduled another scan for 3 weeks time and suggested I see my obstetrician the following week as he was on holidays at the time. When we left our heads were still spinning at the fact that we had two daughters. While I was finalising our account the lady told me that I was a lucky duck and I said, “I know”, I felt exactly the same way.
On the way home we couldn’t stop smiling and giggling. Neither of us had ever really said we wanted a daughter but we were absolutely chuffed that we were going to have two. I phoned my mum and told her, and then text messaged our dear friend Kate and told her I knew what we were having but didn’t tell her. She wanted to wait until we saw her in person that night. Later in the afternoon I went up to my neighbour and friend Nikki’s and she was just as blown away as us. By the time Kate came over in the afternoon she was beside herself with excitement and jumped all over me when I told her. Kate was really hoping for girls.
That night after having take away I was feeling a bit uncomfortable and told Kate I was having some pains which felt a little tightening. I was also telling her how concerned about my cervix I was. There were also other things going on that weekend that concerned me as ‘omens’. A friend of ours was having a party and the last party she had I went into labour with my son. I stopped myself thinking these silly thoughts and concentrated on our daughters instead. Daughters, daughters I just loved saying daughters. We are now the parents of a gorgeous son and two beautiful daughters, just too perfect. We went to bed that night dreaming about little girls. I lay there imagining pushing along our double pram with our two pink bundles snuggled up inside and our handsome little man walking alongside. People would stop and coo over our children, I just loved it.
During the night I woke feeling more pains and this continued on and off all night. By morning I was getting concerned and decided to ring the on call doctor. She told me to come to hospital and bring a bag. We called my mum and she came to stay with Matt. I cried when we left because I knew that I was probably going to spend the next couple of months in hospital and not be home with my little boy. I also knew though that it was totally worth it.
The on call obstetrician checked my cervix and found some mucous but my cervix appeared to still be closed, what a relief. They started me on Nifedipine to stop the contractions and the obstetrician told me I would be in hospital for the duration of the pregnancy. I was mildly relieved, it was always a struggle at home to rest and I was always torn between doing things with Matt and resting for the babies. This way I had no choice but to rest. By the end of that day (Saturday) I had a throbbing headache, which was a side effect of the Nifedipine. I was given pethidine and paracetamol but nothing helped for very long. Scott went home to be with Matt and I stayed in the labour ward over night. The contractions never stopped but I went through times when they weren’t as bad as other times. This went on all day Sunday and into Sunday night and of course the terrible headache.
20 wks
On Monday morning my obstetrician was back on duty, he came to see me and organized for a scan at around 9.15am. I’m not sure what I was thinking all this time, just that I wanted the contractions to stop and I prayed and prayed for god to leave our daughters with us here on earth just as I had done every single day of my pregnancy. I was moved into a room in the maternity ward and Scott arrived at the hospital just in time for the scan. When we arrived the doctor’s offsider started the scan and even though I had been leaking fluid she was happy that there was plenty of fluid around the both babies. She told us she thought everything would be fine but I would have to stay in hospital resting till the end of the pregnancy. She was wrong and right, everything wasn’t fine and I would remain in hospital until the end of the pregnancy. When the doctor came in and did some measurements he seemed quite concerned. He then phoned my obstetrician to come down and have a look at the scan. When he arrived they told us that Paige (twin a) was now considerably bigger than Amy (twin b) and it looked like my previous concerns of Twin-to-Twin Transfusion Syndrome had become an awful reality. There was still more bad news to come and this was that the stitch wasn’t holding and I was 5 cm dilated. Contracting for 3 days had placed a terrible strain on my already struggling cervix. The bag of waters was bulging down like an hourglass into my vagina. I started to cry and our obstetrician started explaining that things weren’t’ looking good. Scott went really pale and looked like he was about to pass out so they put him in a chair. Our obstetrician started explaining the choices we needed to make, (CHOICES - I felt like screaming if I had my choice my babies would be safe and healthy) I asked him what he would do if I were his wife. He said we needed to wait around 24 hours to see if things settled down. If they did they could try more surgery with a balloon to try and push the waters back up and then re stitch. But he wasn’t sure if I’d last 24 hours without delivering our babies.
We went back to our room and cried together for we both knew deep in our hearts that our babies weren’t going to make it. Scott later told me that the worst torture you can give a man is to tell his wife early in the morning that her babies weren’t going to survive and then watch her suffer all day waiting for something to happen. I don’t really remember what we did for the rest of the day. The day seemed to pass by faster than any other day in my life. I was desperately trying to hang on to every last second that I could to keep our babies with me. We talked a lot about our shattered dreams, and at some stage I told Scott we needed to settle on some names. We agreed on Paige Maree for the first baby and Amy Kate for the second. We cried some more and the major part of the day seemed to pass by in a blur. Toward the end of the afternoon I got up to go to the toilet. As I was coming back to bed I said to Scott, “If this is going to turn our for the worst I hope it happens sooner rather than later”. Well one of my prayers was answered because not long after I lay back down on the bed my waters started gushing. I buzzed for the nurse and she came and checked me and put towels all around me. For some reason I’m not sure why I didn’t want to move. I wanted to stay in that same position forever and keep our babies with me even if that meant lying like that for an eternity. A little while later they wheeled me into labour and delivery. I had to get up, as they wanted to change the bed and clean me up. I took my nightdress and underclothes off and told them to throw them all in the rubbish, I never wanted to lay eyes on them again. I put on a hospital nightgown and got back into bed. Not long after they moved me again into another labour ward. The contractions were getting a lot stronger by now and they gave me heat packs, which helped a lot. The nurse Jeannie asked if I wanted an epidural and I asked her what she thought. Jeannie told me that she didn’t think things would go on long enough for one. I agreed and stuck with the heat packs. Sometime around now I went into complete denial and wasn’t thinking at all about what was about to happen. I lost myself in the pains, and actually felt better like the physical pain was covering up the agonizing pain that was in my heart. Trish the nurse counselor came in then, I can’t remember if we asked for her, or if they just sent her to see us. She was really nice and asked us if we had any questions. My question was how long we could have with the babies before nature would start the process of breaking down their little bodies. Trish told us we would have hours. We also asked Trish if she could arrange for an Anglican minister to come and see us.
A little while later a lovely minister, Linda came to see us. Linda anointed Scott, myself and the babies by placing two crosses on my tummy. She said a prayer with us and said she’d come back when the girls were born to baptize them.
Around half an hour later after an excruciating delivery Paige and Amy arrived into this world. Monday 21 July 2003 would be painfully etched into my mind forever. Paige arrived at 6pm and Amy followed soon after at 6.03pm.
I will never forget the look on my OB's face as he asked me if I'd like to hold my babies. The genuine look of pain and concern that I saw in his eyes will stay with me forever. My already crushed heart went out to him. When Paige was handed to me I heard the most pained, primal sound come from deep in my soul that I have ever heard before. I looked at my OB for answers - she was alive and moving. He 'apologised' and reminded me that there was nothing we could do for her, I knew this already. He then passed Amy to me and again she was alive and moving. I don't know why I was so shocked by this as I could feel them kicking and wriggling right up to the moment they left my body but it wasn't really expected that they'd survive the birth. Although shocked at the time I quickly realised that I was eternally thankful to have this time with our babies. Paige was even able to grasp my finger. I then searched every little inch of Paige and Amy's perfect little bodies. Kissed every finger, every toe, their faces, tummies, backs, arms and legs. Then I started over again. I needed to drink in every little part of them, and burn these images into my mind. Looking at their little palms I could see the lines and wondered if they fore told that this is how their lives would turn out. I was so happy that Paige and Amy looked so much like their big brother Matt. I was hoping there would be a strong resemblance between all my children.
When Paige and Amy soul's left this world for heaven they were wrapped warmly in my arms. I am so thankful for being able to cradle them during this time. We cuddled and held our babies for hours after, but I long for them back in my arms, against my chest were they should be. How can a few hours with your babies ever be enough?
There was a big difference in their colour and size, and the DR is unsure whether treatments could have been successful in such a severe case of twin-to-twin transfusion.
It turned out there was an infection in the placenta, so we don't really know what caused the contractions - infection? TTTS? or my cervix?
Whatever the reason my heart will always weep for my babies, and I will always wonder what might have been. I can't understand why we were blessed with two beautiful babies only for them to be torn away from us.
On Friday 25 July 2003 we held a beautiful funeral service for our girls with close friends and family present. As per our wishes Paige and Amy were placed together in a small white casket dressed in little matching white dresses. They were wrapped up in their dad’s christening blanket, which Matt was also wrapped in at his christening. Along with them in the casket were a little bible that was very precious to me and a little Tigger toy, which Matt played with as a baby. The table that held their casket was covered in pink and white flowers and we placed two little pink teddy bears there for each of the girls. We also had candles made for both Paige and Amy, which had their names and date of birth/death on them. I made up beautiful pink order of service programs for everyone and Linda the minister who anointed and baptized Paige and Amy in the hospital came to deliver the service. We had a basket of pink rose petals on the table at the front of the chapel, and we asked everybody to take a handful of the petals and place them in a glass bowl next to the casket. The petals in the glass bowl were to be cremated with our girls; as our family and friends never got to meet our daughters this was our way of having something from all of the people who we love with Paige and Amy. Outside the chapel we had a little pink notebook, which we asked everyone to sign and to leave a message in for Paige and Amy. When I do their scrapbook all of these messages will be put in it.
I will never be able to arrange birthday parties, engagement parties, weddings or other special events for our daughters so it was important to me that the service was perfect. I felt like I had a lifetime of events to make up for. There wasn’t a dry eye at the service.
We are the proud parents of 3 beautiful children. Our gorgeous son Matt and our beautiful identical twins Paige and Amy. I so wish with all my being that at night we could tuck them all safely into there beds here in our house and in the morning wake up to all of their adorable smiles and warm cuddles. I thank god for every moment and experience that we shared with Paige and Amy and even though I wish will all my being that they were here with us, I don’t regret our experience for one minute. I will treasure the gift of all of our children forever.
I often spend time now thinking about a lot of what ifs, what if we’d gone to the other scan place, would they have picked something up, what if I’d gone to hospital earlier, what if I’d rested more, what if my cervix was stronger, what if, what if they spin around and around in my head until I feel sick in my stomach.
When I’m out I find myself staring at pregnant women and their beautiful big round tummies and I’m totally mesmerized if I see twins especially babies in prams. The pain, the thoughts and the shattered dreams just go on and on. I don’t think they will ever stop, and I don’t think I want them to.
Having experienced loss of loved ones before I know that time heals, however losing your children you also experience the loss of the future as you knew it, the dreams you had for your children and the plans you had for your family. After all don’t we as parents see our futures and our lives in our children? The passing days are a blessing and a curse all at once, as each day passes I tell myself that I’m closer to healing, but then each day that goes by is another day since I’ve seen and held my daughters. Which one is better?
I pray that any of you embarking on the wonderful journey of pregnancy right now, deliver lovely healthy babies. For those of you suffering a loss or losses my heart truly bleeds for you.
God bless us all...
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