TTTS Parent Stories: Surviving Miracles
I have a history of difficult pregnancies, several miscarriages, a daughter Rachel born at 24 weeks, she died in my arms and Tessa a fraternal twin died in the womb her brother Jordan survived and is now a healthy 6 years old.
At six weeks I started to bleed and my first thought was 'Oh no here we go again, I have lost the baby'. I went for an ultrasound and it showed a circle but no heartbeat, the technician said that she didn't know if the egg was viable and we would have to wait a couple of weeks and come back for another ultrasound to see if the baby had a heartbeat. I continued to bleed and the next three weeks were just unbearable, little did I know that my whole pregnancy would be one of walking on egg shells.
At nine weeks, still bleeding and thinking the worst I turned up for my next ultrasound, I couldn't even look at the monitor for the fear that I would see an empty screen. I heard the technician make a sound and say "is that?" I quickly looked at the screen thinking oh no what is it and saw the most amazing thing I have ever seen my whole life. Two little heart beats, two little white smudges on an ultrasound screen, alive alive,........ oh my god there's two of them!! I burst into tears, I couldn't breath I don't know what was the biggest shock that my baby was alive or that there were two of them.
Rod had been told to wait outside while the technician had first looked at me, he was invited in at this stage, I told the technician not to say anything. Rod's first question was,"Is the baby alive?" I told him just to look at the monitor. While he looked at the monitor, I looked at him. I heard the technician say to him, "Here is your baby and......here is the other one. His face, the reaction on his face, his eyes went wide, he looked at me and then he just burst into tears. The relief our baby was alive and then his reaction was exactly the same as mine, "oh my god there are two of them." I couldn't wipe the silly grin off his face for days afterwards. Good news travels fast, by the time I went to the loo to empty the very full bladder and walked out into the waiting room there was a group of women and they were all smiling at me in a soft and silly way, we just all stood around not saying much but with huge silly grins on our faces.
It wasn't until I went back to the Doctors a couple of days later that the bubble burst.
The ultrasound results had come back that they couldn't find a membrane between the babies. What did this mean? There was a chance that the cord could get tangled and knotted resulting in the death of both babies. I just sat there frozen, the joy of being pregnant with two babies had just been totally wiped away with a single sentence to be replaced with the feeling I had known before, the fear that my babies might not survive. There was nothing I could do, I just had to play the waiting game, again. It was very hard to be positive.
I continued to bleed for the first trimester, I went back for ultrasounds every two weeks, always relieved to find the babies heart beats and that they were healthy and growing. They both were doing very well growing at a equal rate but still no membrane. I found myself trying hard to be still, I thought that if I didn't move too much the cord wouldn't get tangled and my babies would be Ok. It is a joy to most mothers when they first feel their baby move but for me it was just a feeling of dread and a silent plead to my babies please stop moving.
Each ultrasound they checked for a membrane between the two babies and knots in the cord ( I remember slowly scanning their cords looking for knots I didn't really know what I was looking at just praying that I wouldn't find one). One twin was lying on top of the other so it was very hard to tell if there was a separating membrane but finally at 19 weeks they found a very fine membrane between the two, I can't express the relief that Rod and I felt, I think I breathed for the first time since I had found out about the twins. I thought that was the end of all our fears, how wrong I was.
Expecting twins is not like a normal pregnancy, it is not only double babies but double everything!! The emotions are heightened, the morning sickness is twice as bad and by 19 weeks I was huge ready to burst literally. My doctor had explained to me that my twins were high risk but didn't go into any details, he referred me to the nearest big city hospital. He warned me there were risks with a multiple pregnancy and I would need specialist care that the small country hospital near where I lived couldn't provide.
I was referred to the Fetal Monitoring Unit, FMU for short. Rod and I never had the medical terminology explained to us very well and most of the time we walked around in a kind of a fog. We had ultrasounds every couple of weeks and as long as we saw that the babies heartbeats were strong and that they had both grown some we thought everything was OK, we didn't ask questions ( we didn't know the questions to ask) and we weren't told anything about TTTS or any of the risks with a multiple pregnancy.
We were warned that I would probably go into labour early and the goal was to reach 28 weeks as that gave the twins the best possible chance of survival. So every two weeks I waddled my way into the clinic for my ultrasound, it was wonderful to see my beautiful babies, to say hello and to feel that blessed assurance that they were Ok.
Then at 24 weeks things went dreadfully wrong for me. I lost all the feeling in my hands halfway up to my elbows and the feeling in my toes and feet. I felt like I was being split in half and the pressure was unbearable, it felt like someone had their hand on top of my stomach trying to push the babies out. I couldn't breath and felt like I was drowning in fluid. My ultrasounds went to once a week, it was very hard to see the babies as there wasn't much room but their hearts were still beating and they were moving so I thought they must be Ok even though my instincts told me differently, we weren't told that there could be problems. I knew there was something wrong I could feel it but the doctors didn't tell us anything just kept telling me come back next week.
I made it to 28 weeks, yahoo now the babies could be born but we were told it would be better to hang on for as long as possible. I spent most the time laying down, it was the middle of summer stinking hot so I spent most the day in front of the air conditioner. The pressure in my belly and groin was unbearable, I was absolutely enormous, just standing up made me breathless, I couldn't hold onto anything because of the lack of feeling in my hands and I had started to get really painful headaches and numbness down the side of my face. I knew that there was something seriously wrong but the doctors at the clinic just kept telling me to come back next week.
In the following weeks it is pretty much a blur for me, I can't tell you how many weeks I was at key points but here is what happened.
Twin 2 (the smaller of the two) was struggling he had stopped growing and there wasn't much movement while twin 1 was continuing to grow and seemed to be very strong and active. The ultrasound technician at the clinic told us at this point that there wasn't much point to further ultrasounds because she couldn't take accurate measurements as there was no room left all she could tell was that their hearts were still beating. Still the doctors said nothing. I couldn't lay down for the technician to do an ultrasound because everytime I laid down I couldn't breath, she had to try and do the ultrasound while I was half reclining which added to the frustration of not being able to see the babies properly.
We went home from these appointments full of apprehension, I told Rod I knew there was something wrong and I felt very strongly that we were all going to die. I knew that if there was no intervention by the doctors that the babies and I would not survive. I didn't know what was wrong but I knew it wasn't right.
I would like to explain at this point that the Hospital is a teaching hospital and we saw five or six different doctors so there was no continuity of care, each week it would be a different doctor and we would have to go through the whole history of the pregnancy repeatedly. We voiced our concerns about the twins and the lack of growth of one, they would smile and nod, tell us everything was Ok and send us home. I KNEW THERE WAS SOMETHING WRONG!!!!!!
I had to drive myself to the hospital every week and the carpark is right down the other end of the hospital, it would take me 20 minutes to walk to the unit, one time I actually crawled in the door gasping for air, the nurse asked me are you in labour?? I told her no I just can't breathe, she told me "well next time walk more slowly." I could of screamed.
The pressure on my pelvis was so strong that I had to wear a thick elasticized strap on my hips to support my pelvis and relieve the pain, I was swollen with fluid, I couldn't breath, I couldn't walk, I was numb in all my extremities and was suffering very painful headaches the doctors knew all of this and sent me home every week telling me all was Ok (but twin 2 wasn't growing).
It was at this stage we decided on the names for the boys. Benjamin which means 'son' we gave to twin 1 and Samuel which means 'heard by God' to twin 2, Samuel was struggling and we knew that God needed to hear him if he was to survive. Four days before I went into hospital I went to the solicitors and had my will updated to provide for Rod and my surviving children, I was that sure that within the week I was going to die ( that's how strong my feelings of death were), I wrote letters to Rod and my boys Jared and Jordan telling them how much I loved them because I truly believed I was going to die.
35 weeks, I made it to 35 weeks, I felt like I was dying, I was swollen beyond recognition, felt like death and could no longer feel the twins moving. I had regularly returned to my local GP for check ups in between visits to the FMU, just for the reassurance of hearing the babies heart beats with his little monitor. This time my doctor couldn't find their heartbeats and as quick as a phone call he had an ambulance take me to the local maternity hospital. My blood pressure was very high, the headaches were getting worse and I could tell by the glancing looks the nurses gave each other that they couldn't find the babies heartbeats either. My doctor told me that they had to transfer me to the city because the babies needed to be born and they just didn't have the facilities to take care of the babies there because they would definitely be born with problems.
Once I arrived at hospital it was another round of student doctors, who totally went against my own doctors wishes to give me an emergency caesarean, put me on blood pressure tablets and made me lay down, hooked up to two fetal heart monitors to track the babies heartbeats, thankyou God they are still alive!!!!
Overnight I degenerated, the headache was blinding by this stage, I was fading in and out of consciousness and I couldn't get out of bed. The blood pressure tablets lowered my pressure too much and I was like a rag doll, the nurses kept poking and prodding me, they couldn't hear the babies heartbeats and kept rolling me over to try and get a better reading on the babies.
Oh my god this was a nightmare.
I remember my mother being there, crying, begging the nurses and doctor to just leave me alone, "stop poking her, can't you tell there is something wrong with her?" I just remember saying "Mummy please help me, mummy make them go away, make them leave me alone." It was an absolutely devastating experience for both of us. They didn't treat me like I was a human being they just wanted their machine to trace a heartbeat and if they could have made me stand on my head to get it they would have. Finally they gave up trying to find heartbeats and left me alone, I slipped out of consiousness I don't know how long for, I just remember being woken up by the nurse with another blood pressure pill. I refused to take it, I believed it was hurting my babies. Another ultrasound, Samuel hasn't grown at all and he had gone from being head engaged to being pushed up towards the top of my womb and now Benjamin was head first. I looked at that ultrasound and I said to the technician, "he's dying" She just looked at me and in that silence I could see in her eyes she thought so too. But, the doctor (a new one) just looked smilingly at me and said everything is Ok go back to the ward. I just wanted to scream and shake the doctor," my babies are going to die." I felt so totally helpless to save my babies.
Rod arrived at the hospital at 4pm, 11th of April 2000. When he saw the state I was in he exploded internally, he just looked at me after I told him what had happened that day and just kept saying "right, right" and then he said "I'll be back in a minute" . He went looking for the Doctor in charge of the FMU, the first doctor we had seen and then sporadically over the next 16 weeks. Rod told him I was very ill and in hospital and why hadn't he been to see me? The doctor hadn't even been told I was in the hospital !! In sheer desperation Rod looked him right in the eye and firmly said "you do something for them they're dying, I don't want to lose Jackie and my sons", the doctor assured Rod that he would go and find out exactly what was going on. Rod came back upstairs and by 8pm I was prepared for an emergency caesarean. I truly believe that if Rod had not been assertive with that Doctor that night the babies and I would have died.
Benjamin was born at 11.56pm, he came out a deep reddish purple color, screaming his lungs out, that would have to have been the sweetest sound I ever heard. Samuel was born at 11.58pm but he wasn't screaming, he was very pale, not white but yellow pale he looked like a starved child you see in a famine, a skeleton with a thin layer of skin. The nurse was holding him and rubbing him, she seemed happy with him and gave Samuel to Rod, Rod held him but was very quietly watching him. Sam wasn't breathing, he didn't tell me just looked at the nurse, who took him away and worked on him. Sam was revived two more times before he was taken away to the NICU. I was being stitched at the time so didn't see what was happening with Sam, Rod told me later.
I didn't see my boys for hours, I was taken to post-op and kept under observation, I was haemorraghing badly and lost allot of blood. I had to have a nurse watch me for 24hrs to make sure I didn't fit. It turned out that I had had a mild stroke, the side of my face went numb and it took weeks, months, years slowly before all the feeling came back to my limbs and face.
Benjamin weighed in at 6lb 15oz and Samuel just under 5lb. The pediatrician came and saw us later that night to tell us what had happened and it was then that the full story was revealed to us. If the twins hadn't been born when they were they surely would have died, the twins had TTTS, this is the first we had heard of it, we had read a little about it but the doctors had never said anything about our babies having it. Samuel couldn't breath for himself, couldn't feed and was anemic from the lack of blood. He had been bleeding into Benjamin through their shared placenta and was close to death. Benjamin, was fine, a lovely rosey color from all the extra blood he had received but otherwise healthy and in the next few months his colour would return to normal.
That night I was wheeled up in the bed to visit Samuel in his humidicrib, he was so tiny lying there hooked up to all these machines. I remember placing my hand on his body and passing all my strength to him, willing him to survive. I didn't see him for the next week, I was confined to bed, Rod would go up there and sit with him and talk to him.
It was the strangest feeling, I would hold Benjamin in my arms feeling content with him but I knew I had had two babies, there was a distinct empty feeling that couldn't be filled. It was eerie I knew I had had twins but it just didn't feel like it, a strange feeling hard to describe. Benjamin was very unsettled, he constantly wanted to be held close and refused to lie in the crib, Rod and I took turns holding him all the time that week without Samuel.
One week later Sammy was brought downstairs to stay, all the family was there to greet him, it was such a lovely surprise we had a celebration in the room. I layed Samuel on the bed and place Benjamin next to him, I told Ben "here you go here is your brother" and a calmness came over him and they laid together head to head and Ben laid quietly for the first time since he had been born.
It is hard for me to tell you about TTTS because I didn't know that is what my babies had till after they were born. I just knew that there was something terribly wrong for weeks and I couldn't get the doctors to listen to me. I have learnt that a mother's instinct is better than any doctors' diagnosis.
My boys are very energetic 3 year olds and everyday is a blessing. We have had many ups and downs with them and they are far from over. At 12 weeks they were both in hospital again with bronchiolitis which developed into pneumonia. Samuel who was weak to begin with stopped breathing on two occasions, we thought we were going to lose him, such a overwhelming feeling of helplessness watching your child who can't breath. But Sam has a strong will to survive and he is still here.
Sam's head leaned to the side and we had to strengthen his neck muscles so he could hold his head up straight, we have also had to monitor him for brain damage from the lack of oxygen at birth, but I am pleased to say he is as bright as a button, too smart for his own good sometimes!!!!.
Once the boys began to walk we noticed that there wasn't something right with their legs, especially Samuel's (oh no not Sam again). They have a degenerative bone disease which causes the Tibia (shin bone) not to grow straight. Their tibia's are twisted, you can see it very distinctly in the x-rays. Samuel's feet face inwards the toes pointing towards each other when he walks, Benjamin has only slight twisting. They look very bowlegged and next year they have to start treatment. Benjamin is to wear leg braces and Samuel who has an acute case will probably need surgery and leg braces.
I know with everything they have been through they will take this next hurdle in their stride with all the laughter and joy they bring to the world.
I would just like to say my experience with the Doctors and hospital was I believe a very negative one and if we knew what we know now we would have spoken more firmly of our concerns and made the Doctors listen to us. It almost cost us our babies and I shudder everytime I remember how close we came.
My advice to you is make sure that you are heard and educate yourself with all the risks involved so that you can help give your babies the best possible chance of survival. Don't be afraid to ask questions and demand answers, your questions are relevant and if you don't get the answer you want keep asking questions from as many sources as you can until you get the right answer.
These are your babies if you do not speak up for them who will?
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