TTTS Parent Stories: Devon Grace & Brianna Hope
I still longed for more children, and in February 2000, I fell pregnant again. At 11 weeks I began to bleed and cramp ~ the familiar pain of rhythmic contractions, pushing a little life from my body ~ and I lost my baby. Again, I thought this was the worst thing that could ever befall ME ~ these things don't happen to ME! I only had live, healthy children. I never expected anything less. I felt my loss very keenly, but I was still compelled to increase my family.
In August 2000 I fell pregnant again and told my husband on Fathers Day (he got an 'extra' fathers day card from the positive test stick). 8 weeks into my pregnancy, I had a small 'show' -my doctor did an ultrasound that showed a tiny heartbeat and a still living baby. But to be on the safe side, she sent me from my country home in Tom Price, W.A. to King Edward Memorial Hospital in Perth. I told my sister Debbie (who lived in Perth) that I was coming and she organised someone to look after her 2 children, picked me up from the airport in the evening, and drove me to the hospital the next day. I packed a day bag, as I was feeling certain that my examination would end with a D&C for a missed abortion.
We went to A&E, I was given an examination and asked a enormous number of questions - nobody told me anything - and then I was sent off for an ultrasound. The wand touched briefly to my stomach and for seconds only, I saw a baby - with heartbeat. The relief was enormous.
She touched the wand to my stomach again, and I saw the baby again! Then she uttered those incredible words - "are you ready for a surprise?". My response was immediate - "You're not telling me there are two of them!!!!!!!". She smiled and said "I love this part of my job". I was absolutely stunned.
My sister and I were told to return to A&E and I alternated between tears and hysterical laughter. We couldn't wipe the smiles off our faces. Debbie was overwhelmed to have been there to see this absolute miracle on a day we had expected to be so sad. There are NO twins in my family. Ever. How could this be?
When we returned to A&E I was booked straight in for a visit to Genetic Counseling. We made a brief detour to the front of the hospital so I could call my husband on my mobile. He said "How are you? How's the baby?" and I said "the babies are fine - honey, there are 2 of them!". He started laughing (and continued to laugh for the next 2 months!).
The counselor I saw sat us down and explained everything - my risk factors (based on age, previous pregnancies, family history), and all the tests that could be done. I said I would look over the information and speak to my GP in Tom Price about what tests I wanted to agree to.
I flew back to Tom Price the next morning feeling totally "special". I had this amazing secret and I wanted to keep it to myself for a while.
Unfortunately, that very day my 4 year old went to kindergarten and told his teachers that "My Mummy has 2 babies in her tummy" and that was that. But I didn't mind. I was delighted. I was 9 weeks pregnant with twins and I didn't have morning sickness, and all was right with the world!
I agreed to the 12 week nuchal fold translucency-screening test. Based on the outcome of this, I would (or would not) agree to amniocentesis at 15 weeks. So at 12 weeks, I flew down to Perth again, had my ultrasound, and was given the results that afternoon. The results on both babies put them in the high risk group, one more so than the other. Naturally I agreed to return in 3 weeks for amniocentesis. But I wasn't concerned. I understood enough about screening tests to know about false positives, and false negatives. So at 15 weeks I flew back to Perth and had a twin amnio performed. These results would take 2 weeks to return, so I flew back home feeling only a little apprehensive, and eager for the results.
Though I didn't know the sex of these babies, I felt sure they would be girls. The baby on the left side was quiet and I named her Devon. The baby on the right was quite upset by the intrusion of the needle for the draw of amniotic fluid and positively lurched over to her sister when it was Devon's turn for the needle into her sac. I named this baby Brianna. At 17 weeks I received the call from the Genetic Counselor. Both tests showed no abnormal chromosomal results, and yes, both were girls. Still undetermined was whether these twins were identical or fraternal, and though I considered this would be my surprise at birth (as I already knew the sex), I regret now that I never pursued this being determined.
At 19 weeks, I again flew to Perth for my major scan. It was very detailed and took a long time to carry out but I was pleased that they were being so thorough. It showed a due date of around the 27th April 2001 (which agreed with my dates), and only a couple of days difference in size between the twins, with no problems noted.
I had now reached a 'sick phase' in my pregnancy. It commenced at 14 weeks with gastroenteritis, followed by flu, followed by a positive Giardia test, followed by severe lower segment uterine pain which lasted for 5 days which was put down to a bladder infection (but funnily enough coincided with the start of my donor twin's growth retardation); followed by another flu and again, more gastro (but not Giardia again). I was ill from 14 to 24 weeks and during this period was largely bedridden. I had just enough strength to care for my 2 boys, but I was sick, tired, listless and nauseous. I was also having strong runs of Braxton Hicks by week 20 and enormous lower pelvic pain. I only started putting on weight at week 14, and was absolutely huge by 24 weeks. People were asking me if I was sure I wasn't having triplets and not twins! Because of the huge size of my stomach, my doctor organised for me to take both the glucose tolerance test and later, the glucose challenge test. These both came back as normal and no further follow-up was done.
Between weeks 24 and 26 there was a period of calm. I was not sick, but still very tired and achy. I had a little more energy, but could still only carry out basic chores. It was now that I started making trips to the hospital weekly - I had already gotten into the habit of saying to people that I recognised the twins because "Devon was smaller and didn't move as much as Brianna". Also, I could recognise that Devon hadn't moved position since the 15 week amnio and ultrasound. She felt like she was lying on my left hipbone, which was a little uncomfortable, so I got into a routine at night of lying on my right side to try and 'move her' from her my hip, but it never happened. Brianna would kick and wriggle because I was lying on her, so I swapped sides several times a night to give each baby a chance to sleep without being squashed by me.
On my first 'impromptu' visit to hospital, I was found to have very elevated blood pressure and traces of proteins in my urine. I was hospitalised for 24 hours of bedrest and my blood pressure returned to normal limits. However I recognised the fact that I had been 'symptomatic' with high blood pressure for 2 or 3 weeks already. I mentioned my symptoms over the previous weeks to the nursing staff and the GP, and on discharge was told to come back if I had a return of these symptoms. The next week I went up again because I just felt worried. I had slight traces of proteins and ketones in my urine, but not enough to cause concern. On every visit, they would listen to the twin's heartbeats and I would be reassured for a couple of days. But my intuition was strong that something was wrong. I commented to a friend when I was 26 weeks pregnant, that I had a bad feeling that the twins would be born very premature.
My husband had been trying to talk me into buying a 2nd hand twin pram that someone he knew was selling, but I was determined not to buy anything 'twinnie' until I had both girls ready to take home. I got into the habit of drinking a bottle of lucozade every day, just to feel the twins move. Brianna would start kicking away within 2 minutes, Devon would make some movement after about 10 minutes. I kept telling people this; people I met at the shops, the nurses at the hospital, the GP. But they just listened to both twins heartbeats and said 'they're fine - you're fine. Don't worry so much'.
At 29 weeks I flew to Perth again for another ultrasound and ante-natal visit. As I lay in bed on the Tuesday night before I flew down to Perth, there was an enormous flurry of activity between my twins. Devon, normally quiet and gentle, was kicking away like a jackrabbit and Brianna was responding to her kicks with her own. This was the first time my twins re-acted to each other like this. The uncommon stimulation and movement of both babies was unexpected, but wholly welcome. They were both okay.
Both in there, kicking and alive. It gave me the most peace I had known in the last 3 months. Adding to my feelings of relief was a paragraph I had read in one of my baby books a few days before - "95% of babies born after 28 weeks will survive ." YAY!!! My babies had made it past 28 weeks. Nothing could go wrong now !!!!!!!
On Thursday the 8th of February, my sister Debbie picked me up at 7.30am to drive me to my 8am ultrasound at King Edward Memorial Hospital. We arrived just in time and were taken straight into an examination room. I lay down, and the ultrasonographer started her examination of the babies. Once she had taken a few basic measurements on Brianna and checked the cord and blood flow through the body (which was visible to me because of the coloured pulses on the screen), she then moved over to Devon. Within a minute she had taken a stomach measurement and a head measurement and checked the cord and blood flow. I could see immediately that the flow was only patchy, and I started to feel the first pricks of fear.
She told us that the measurements for Devon showed her at a size more in line with a baby of 23 or 24 weeks gestation and she would have to go and get someone else to have a look. As she left the room I turned to Debbie and said 'I'm not leaving hospital . they're not going to let me go, there's something wrong!!!". I think she was worried too, but she just said "just wait - you don't know what's happening yet. It will be alright".
Within 5 minutes the High Risk Obstetrician Jan Dickinson was in the room and running the ultrasound wand rapidly around my stomach. She confirmed that there was an unusually large size discrepancy with the babies and a few minutes later, a Fetal Maternal Medicine specialist Craig Pennell came in also. They spoke together and occasionally I heard words like 'very anemic' and 'thickened heart muscle', 'donor' and 'recipient'. They sounded almost excited. Jan Dickinson said, 'Yes, yes, it is - twin - twin transfusion - look, classic anemia' and Craig Pennell said 'I've only seen one of these before, in Melbourne .'. Once they had finished their scan, I was told to go to the ante-natal clinic where Craig Pennell would meet me.
Once he turned up, he sat down and told me about twin-twin transfusion syndrome ~ It only happens with identical twins, and though uncommon, occurs approximately 1 in every 58 identical twin pregnancies. He told me that it was quite advanced, and in earlier stages they could have tried amniotic reduction as a treatment but it was too late, and the best that they could hope for was to keep me pregnant for another 2, 3 or more days. I needed steroid injections to start straight away, and I was going to be admitted to hospital and I would not be leaving until the girls were born.
He explained that an artery had grown between the two placentas, and at some point during my second trimester, had become a bypass - blood and oxygen and nutrients which should have been going from Devon's placenta, through the umbilical cord to her, had mostly been getting bypassed at the placenta and shunted across to Brianna. Devon was anemic and growth retarded, Brianna was at risk of heart failure from having to move 2 volumes of very thick blood through her little body.
They estimated from the ultrasound that Devon was probably about 800 grams, and Brianna around 1400 grams.
Devon was my 'donor' twin; also the 'stuck' twin. Apparently this term is used to describe a amniotic sac so depleted of fluid, that it 'sticks' to the uterine wall (hence my sense that Devon was constantly resting on my hip bone - and that I couldn't 'float' her into a more comfortable position by lying on my right side). Brianna, my 'recipient' twin, had an excess of amniotic fluid, which, if drained during my second trimester, would have put her less under pressure, and also allowed more room in my uterus for Devon - this easing of pressure would also have increased the amount of blood and oxygen flow to Devon. But it was already too late. I felt quite dazed. I was still smiling (sort of). Surely this could not be happening to me? There was a sense of urgency, but it was calm urgency. These people were confident and they were experts and they gave me no cause for alarm. There was something wrong, but they knew what it was, and they could deal with it. My girls would both be okay.
From there I was sent straight to fetal tracing for both babies to be simultaneously monitored. I was given some cordial to drink and they spent � hour doing tracings on both babies. Brianna seemed to do quite well but Devon's heart-rate was perceptibly slower - around 130 beats per minute to Brianna's 145bpm. It was also noticeable that Devon's movements were sluggish while Brianna behaved more normally. I was then told to go to reception for my admission details.
Before being admitted I went outside and made a call to my husband. I started the conversation by saying "I'm sorry - but there's something wrong with Devon. She's really little and they are going to deliver the girls in the next 3 or 4 days. You're going to have to pack the boys up and drive them down to Perth". Obviously he was pretty stunned. So was I. No matter how much I had worried during my 2nd trimester, I never expected anything like this. It was a very shocking situation, but I was outwardly calm and confident about it all. After all, my twins may be going to be born premature, but they weren't going to die! My husband said he would start making phone-calls and arrangements with work, and would phone me at the hospital in the evening.
I checked into hospital at 1pm. I had an appointment at 9am the next day
(Friday the 9th February) for more fetal tracing. The prescribed monitoring of my pregnancy from this point was to be fetal tracing one day, an ultrasound the next. Day by day, until the twins could no longer be safely left inside me. I spoke to my husband in the evening and he planned to leave Tom Price at 3pm the next day (Friday) , and be in Perth by midday Saturday. He had to inform work, organise the house-sitters, change my air ticket, pack enough things for the boys for a month or more. He also needed to get a good sleep as the car journey is approximately 20 hours (with children). He said he would call me again the next day before he left home.
In the morning, I went off for my appointment at 9am. Today the news was
not good. Devon's heart rate had slowed, and she could not be roused, not even with the 'buzzer' that they use to stimulate inactive babies. She
was quite literally, dying inside me and she needed to be born so they could help her. I could tell that the nurses monitoring me were worried but
they persisted for 45 minutes to get reasonable tracings for both babies. But it just wasn't possible. I was sent back to the ward, and found both Debbie and Belinda waiting for me. The doctors came to see me and told me that another ultrasound had been booked for 11am because the fetal tracings had been so poor. So at 11am the three of us went to ultrasound - after a fairly brief examination and some more muttering, I was told by Dr Pennell ' Well, it looks like you're going to be a mother again - this afternoon!", and again I was sent back to the ward.
At 1pm I had my second steroid injection. At 1.30pm, I had a visit from
Dr Kathy Martin who is a Paediatrician from the Special Care Nursery. She spent quite a lot of time telling me about premature babies - the unit, the treatments they use, the monitoring. Devon was expected to weigh about 800 grams, and she told me that on the whole, babies of that weight do quite well. Brianna at 1400 grams should do 'just fine'. Though Devon was small, they anticipated that, developmentally, she would still be on par with a baby of 29 weeks gestation. At 2pm, several doctors came by and I was told that I would be taken to theatre for a c-section at 4.30pm.
At 2.30pm, my husband phoned.
I had been thinking long and hard since the ultrasound about what to tell him. He was facing a long drive with 2 small boys. He wasn't going to be in Perth by 4.30pm, and even if it had been possible, his presence would not change the outcome. The twins had to be born, and their birth could not be delayed, so with great reluctance, I told him that 'everything was okay, and I would speak to him tomorrow when he got to Perth'. I just couldn't put him through the worry before such a long drive, through the night, that things had become dire so quickly. I didn't think it was fair to him, or safe. My sisters made arrangements with friends and family to have their children picked up from school and looked after. They were both staying. It was decided that Debbie, 6 months pregnant, would come into theatre for the cesarean, and Belinda would wait outside and follow the twins to the Neo-Natal Intensive Care Unit. She had a camera and a video camera and a whole lot of persistence which ultimately made a huge difference to me.
And then the operation began. There were 2 teams of 4 medical personnel
around 2 clear plastic baby cots. There were 2 obstetricians, 2 nurses, and 2 anesthesiologists around me. My sister was holding my hand. And while they cut, I waited. I waited to hear a baby's cry, I waited to see a baby's face.
Brianna was delivered first and tears rolled down my face as I heard 2 feeble cries, and then silence as she was bundled up and taken away. I stretched my neck as far as I could, to see this absolutely minute little face peering out from cotton wool and tin foil. And then Devon was born and there was no cry. And I craned my neck as far as I could in the other direction, only to see the back of people in surgical gowns standing around the 2nd cot. And a doctor's face loomed in front of me and he said "I think we're going to have a real battle to save Devon. She's a lot smaller than we thought" and he was gone. I looked at Debbie and said "I wish he hadn't told me that. Not now", and we both started to cry silently.
Then they started to sew me up again, and the sensation was agonising. It wasn't pain in the normal sense but I was just about screaming from the pulling and tugging - it was so violent in their haste - that Debbie's arm was shaking
where I held her, as my body was pulled about from the force of the stitching. I was offered another injection for the 'pain' and to my eternal regret, I said yes. "Yes please. Yes please now ..." And the pain was gone. I was relaxed. And within minutes, I was so drugged up to the eyeballs, that I remember very little of the next three hours. But my sisters have filled in a few of the gaps for me.
The doctors finished stitching me and took me into recovery. 5 minutes later I had already been taken down to the Neo-Natal Intensive Care Unit due to Devon's condition. They wheeled my bed over to Devon, where she lay, tiny and pale and naked in this great big cot, already with so many lines and tubes in her. The nurses made a little room for me, but continued working on her, and then I was taken away. On the other side of the unit lay Brianna - so very tiny, with so many lines and tubes, but very red coloured, and her body so swollen from all the extra blood. She too was naked, with cotton wool still sticking to her body. And then I was taken away from her too.
I was taken back to my room about 6.30pm and the next thing I remember is the phone next to the bed ringing. I looked at the clock. It said 7.55pm. The girls had been born at 5.35pm and 5.36pm. The person on the other end of the phone told me that I needed to come back to intensive care straight away. And I knew then that Devon was dying, that one of my girls was dying and they wanted me to see her before she slipped away. I don't remember the journey back down to the ground floor in the wheelchair either, but I do have a vivid memory, with absolute clarity, of sitting there, next to Devon, with all the nursing staff a few paces away from the cot, and Dr Nelson Fleming a Paediatrician from Princess Margaret Hospital who had been looking after Devon, sitting next to me with his arm around me, talking. Telling me that she was just too tiny at 470 grams, and too sick to survive. That she had been given 3 blood transfusions and none of them had helped. And it was time to take out the respirator that was helping her breathe, and let her go. I asked if I could hold her before they turned it off and took out the intubation, because if there was only a flicker of life left in her, I wanted her to feel my arms around her before she could no longer breathe.
For her 2 hours and 44 minutes of life outside of me, she had suffered the pain of medical care that could not keep her alive, and I wanted her to feel me before she left us. The tears were almost blinding me, but I held her tiny body, absolutely perfect in every way, which was loosely wrapped in a sheet. And I whispered to her "I'm sorry Devon", and I made the universal mothers sound when comforting their babies . I soothed her with 'sssshhhhh, sssshhhhhhhhh, it's okay, ssssshhhhhhh' as I rocked her. And my tears fell on her, and my tiny little baby didn't move. I never saw her eyes open. I never heard her cry. And she was gone.
My emotional pain was like a gaping hole - this huge black void of anguish and despair and horror and disbelief. I felt like I was being swallowed whole ~ sucked into a completely non-physical place where I was screaming silently. I was at the very centre of something so dreadful, but I felt so separate from it, like I was outside of myself watching. Where I had gone, no-one could follow. I know it was shock, and also the drugs I had been given; but it all felt so unreal.
Other mothers know this feeling. Other mothers have been there . But it was me. This time it was happening to me, and no other life experience can prepare you for that journey. At 10am the next morning I sat by the phone in my room and thought about my husband. I wasn't ready to tell him - not like this, over the phone - but I wanted to know how soon he would be arriving. He was carrying the mobile, so I dialed the number. He answered quickly, and told me that he was 2 hours away, and would be at the hospital that afternoon. And then he asked "how's it all going? Is everything still okay?". My heart stopped - not like this; it was too cruel . But I couldn't lie now. So I said "The girls were born last night honey. Brianna is doing really well. She's really strong and she's fighting" . after a short pause, he asked "and Devon? What about Devon?". I started to cry, and told him "Devon only lasted for 3 hours - I'm sorry. Devon died."
After Todd arrived at the hospital we went down to NICU to see Brianna. He sat there silently with tears pouring down his face, feeling the same as I had the night before. He could not touch her either. It feels intrusive to touch the skin of a child not due to be born for such a long time. How could they be ready for all of this - the noise, the lights, the pain. It doesn't seem possible that they could survive such an insult. I quietly asked one of the nurses to organise for Devon to be brought to us and just stood behind him, crying. When Devon was placed in my arms, Todd looked at me, and said "I can't hold her - I'm sorry, I just can't". And I said, "that's okay, you don't have to hold her if you don't feel you can. But
you really need to see her, to say goodbye".
He watched me holding her, and I unwrapped her arms to show him her tiny hands and long fingers. And then her legs, to show him the perfect feet and toes. And I pointed out the features on her face, the nose that all our children seem to share. And after only a matter of minutes, he said that he wanted to hold her. Needed to hold her. And he did, taking his time to absorb her tiny perfection. He handed her back to me, and finally reached out a hand to touch the fingers of his living daughter Brianna.
Emotionally, we were so wretched - but tiny, tiny fingers wrapped around a parents finger; feather-soft touch, and pressure as light as a whisper - these were our first bonds with our surviving daughter. As strong and binding as the lusty cry of a full-term baby. We were now parents of two daughters, awestruck at the beauty of two 3 month pre-term babies. A mystery unveiled of life that should not yet be seen. One living and one dead, but our daughters and so very beautiful to us.
On the day before my discharge, my husband and I finally chose middle names for the twins. I wanted the names chosen before I sent off the forms for birth certificates, and before the funeral service. After a great deal of thought, Devon became Devon Grace ... And Brianna became Brianna Hope. Special names for our very special baby girls.
Then began the task of organising Devon's funeral. My husband wanted to make the casket himself with the help of a friend. He spent Saturday to Sunday on this task and in the end created something truly beautiful. As he said later at the funeral, "I will never have the opportunity of making things for Devon as she grows up, and this was my way of making something special for her". My sister Belinda organised the clothes for Devon. She bought them from a specialty shop that sold porcelain dolls and clothes. The outfit she bought was absolutely exquisite. Jeanne Wheeler from Pastoral Care at King Edward organised the service for us.
We contacted a funeral director to take Devon in her casket from the chapel after the service to an unattended cremation at Karrakatta. Todd chose the song he wanted played. We were told to treat the service as an opportunity of celebrating Devon's life (short though it was) and that family could still bring gifts - the gifts they would have brought Devon if she had lived. But instead of filling her casket with stuffed toys, I wanted people to leave her something they would always remember. So I asked all our family and friends to get single photographs of themselves and of their children, and for each person to write a personal and private message to Devon. These photographs would be placed in the casket with her, and only the writer, and Devon, would ever know what these messages said. I did this because I wanted to ensure that in years to come, people would not think about the pink teddy they left her, but remember something far more personal and meaningful. It was my way of ensuring that she would not be forgotten by them.
I wept constantly up until the funeral. I spent hours every day or evening at the hospital with Brianna. I took care of my boys. I interacted with my family. I made phone-calls, and took phone-calls. I went through the motions and I kept on moving, but inside I was dying of sorrow. When the main part of the funeral service was over, and people had left their 'gifts' in the casket that was placed at the front of the chapel, the song "Nothing Else Matters" began to play. It is a long song, about 6 minutes, and after a minute I could stand it no longer. I asked Todd to go and get Devon for me, so I could hold her. It felt so lonely that we should all be silent, looking at her in her casket, so cold and so small and so desperately in need of a mothers arms. I had not held her since my discharge from hospital, though I spent time with her every day while I was still a patient. This was my last opportunity to hold her close, to rock her, to put my arms around her.
I held her for the rest of the service, and carried her into the 'quiet room ' where she would be placed again in her casket, the lid sealed, and taken away by the funeral director. Letting her go was so hard - my whole body ached from the pain of having to say goodbye. But I knew Devon was already gone, had been gone these last 12 days. I had delivered two babies 12 days previous, yet my arms were always empty, and I yearned to feel that weight in my arms, to look down into the sleeping face of an infant. I handed her to Todd, who placed her gently on the lace pillow, onto the bed of pink satin with embroidered teddies sewn into the lining; the lid was placed on top, screwed down, and she was gone. Everyone went home after the service because Todd and I had asked to be left alone.
Our darling baby girl Brianna spent 2 weeks in Neo-Natal Intensive Care before she was declared stable enough to move 'up' to the Special Care Nursery. She was ventilated for the first 72 hours, and was helped by alternating PBF therapy and CPAP up to the 14th day. She continued with PBF therapy until she was 6 weeks old. During the first 6 weeks she had 254 bradycardias, 81 apneas, 3 headscans, 2 chest x-rays, 10 days under jaundice lights, umbilical lines, intravenous lines, countless heel pricks and blood tests and went through 168 shift changes. At birth she weighed 1255 grams, she was 37.5cm in length and her head circumference was 26cm. She was born at 5.35pm on Friday the 9th February 2001. Her lowest weight was 1055grams.
At discharge she weighed 2105grams. 8 weeks after her birth and at 37 weeks gestation, Brianna was finally ready to leave hospital. We had some scares in the early weeks and I thought the day would never come when I would leave the hospital with a baby in my arms. We were flown back to Tom Price with a nurse escort as she needed oxygen for the flight, and finally our little family was together again. It was a happy day, but as with every day since, I have always wondered about having been able to come home with my 2 full-term healthy baby girls. To see them side by side in sleep and in play. We live with it for there is no other choice. But still I long for my other daughter.
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