TTTS Parent Stories: In Memory of Bailey Rhys Johnson
And a tribute to the survival of Ethan Thomas Bailey Johnson
Our Story is dedicated to the short and precious life of our darling son Bailey who lost his battle to live due to complications associated with the devastating TTTS.
After experiencing two devastating miscarriages our first born child Matthew entered the world after a long and anxious 38.6 weeks on Thursday the 26 April 2001. Scott and I decided in January 2002 that we had a desire to give Matthew a baby brother or sister, I fell pregnant again in February 2002. Scott and I were very excited and very much looking forward to again welcoming a new life into the world. I eagerly awaited my first ultrasound at 7 weeks and it is from here that our journey began. We sat waiting to be called for our ultrasound and I jokingly said to Scott ‘wouldn’t it be funny if there was two in there’, low and behold what was a joke was about to become a reality. The Sonographer asked me if I had any unusual pregnancy history in the family, and apart from recurrent miscarriages, nothing came to mind. ‘What about twins?’ she asked, instantly turning to Scott in shock and with a bit of a chuckle, I replied ‘are you sure?’ She was sure, as up on that screen was two beating little hearts. Joy, excitement, shock and laughter soon became fear and hope as she informed us that she was concerned that one of the sacs was a little small and that I could miscarry, I was devastated at hearing this, however I held on to the belief what was going to be would be and it was out of my control.
We anxiously awaited the day for our twelve week ultrasound, it was at this ultrasound we discovered that our twins where identical. Everything went well, I progressed to nineteen weeks and again we had another normal ultrasound and found out we would be welcoming two more little boys into our lives. We were so thrilled and excited by this news, still trying to absorb the idea of having twins let alone three boys under two.
Our next appointment was one month later at just over 23 weeks, close monitoring of our multiple pregnancy was very reassuring for us. The twins measurements where done however there was some concern with the growth of twin 2 (Bailey) as he appeared to be a couple of weeks behind twin 1 (Ethan). 250g was the difference and after talking with the Doctor he informed us that he wasn’t at this stage concerned and there was no sign of evolving twin to twin transfusion. Nevertheless, I was extremely anxious and concerned for my twins. I was advised that closer monitoring would be necessary and I was booked in for a blood flow study at around 27.5 weeks gestation. At 27.3 weeks, I noticed slight spotting and Scott immediately telephoned my Obstetrician, Dr John How. We met John at his rooms where we decided it would be best for me and the health of the twins if I was admitted to hospital for rest in order to try and avoid early labour. I commenced daily fetal monitoring and it was from the first reading that my world started crumbling around me. Twin 2 was showing signs of distress with decelerations in his heart rate. Another reading in the afternoon appeared to be normal. I continued to fear for the safety of my babies and anxiously awaited each day to have another foetal monitoring done. At 27.5 weeks the nurses failed to find twin 2 heart beat and an urgent ultrasound was requested. I was informed at this stage that it possibly meant pre-term labour, I was distraught, this just couldn’t be happening. After a long and anxious wait twin 2 heart was beating away just hiding under his brother. After I thought it just couldn’t get any worse, I was informed that twin 1 had a little too much amniotic fluid and twin 2 had borderline normal. I began to have blood flow studies done every second day to monitor the progress of the twins when disaster struck on Friday the 13th of all days. I was 28.5 weeks when the diagnosis of grade 1 TTTS was made. I just wanted desperately to get to 32 weeks to give our boys the best possible chance however it wasn’t to be. My Obstetrician visited daily and as he was a religious man, he prayed for the well being and survival of our twins. I was so scared, so alone, just praying that my boys would be born safe and well. I was scheduled for another doppler on Monday the 16th of September, I felt I couldn’t wait the weekend and requested that I have a doppler done on Sunday. It was the morning of Sunday the 15th of September when I had my next blood flow study done, I knew what to look for by this stage, I only had to look once at the screen, when I turned to the Doctor and said ‘my delivery date is closing in isn’t it?’ she replied ‘I think so’.
Dr How visited me fairly quickly and asked if I could phone Scott, as we needed to talk about delivery, I froze, I couldn’t believe this was happening I was only 29.3 weeks, my babies would be so small, would they survive? John informed us that our twins lives where now compromised and we now risked losing them both. There was no decision to be made we had to deliver them to give them the best possible chance. Twin 2 (our donor twin) was in a bad way and could soon die and twin 1 (recipient) would shortly follow. There was two beds awaiting our boys in the NICU and the time had come. I was scheduled for theatre at 4.30pm, in the mean time the NICU Paediatrician came and visited us and spoke to us about prematurity, possible outcomes and realities. Soon afterwards the Anesetist came and spoke to me about what would happen in theatre. My trolley arrived at 4.40pm and off I went. We hadn’t even decided on our babies names, we knew we wanted them to be born with a name. I was given a spinal block and wheeled into theatre, I was a nervous wreck. We decided that the first born twin would be called Ethan Thomas and the second born would be Bailey Rhys. At 5.15pm on Sunday 15th of September 2002 Twin 1 Ethan entered the world. I heard him squawk it was just wonderful to hear him cry. At 5.17pm Twin 2 Bailey was born, there was no cry, no noise, I was frightened. Scott said ‘the second baby is out, he is very small’ however they where both alive. They seemed to work on Bailey for some time. At that stage Ethan was brought over for a quick glimpse, I kissed him on the forehead, his little eyes where open. Bailey was too sick and I had no chance to kiss him. The boys where quickly stabilised and whisked off to the NICU, Scott followed behind and I was placed into recovery. Scott returned with a photo each of our boys, Ethan weighed 1220gms and Bailey 758gms considerably smaller than suspected, I was shocked. I was wheeled down to the NICU to meet our boys, I just couldn’t comprehend that I now had two more babies, I was so overwhelmed. I said a quick hello to Bailey then to Ethan, touching each of their tiny little hands. They where just so small yet so perfect. Ethan was purple and very swollen from receiving too much thicken blood in utero and Bailey required a transfusion as he was very weak and anaemic from the blood being pumped to his brother. Both the boys heart where very weak and they struggled to regulate Ethan's heart rate and blood pressure for some time. Both boys where ventilated and sedated due to there poor condition. Ethan was critical by this stage, Bailey was stable and not doing to bad. We where informed that there was concern for Ethan and they weren’t sure if he would make it, this is the normal outcome with TTTS, that the recipient twin normally loses there battle from their heart being under to much strain. Monday morning came and I managed to see the boys for a short time, as I was quite unwell myself and I couldn’t handle the heat in the NICU. I just thought this is not how it was meant to be, my poor little boys, fighting for there lives, how could this have happened. Scott’s Mum and Dad arrived to meet the boys and Matthew met his new little brother’s, although he was more interested in trying to press buttons and pull on cords. My sister Kerry and her family where next to arrive to meet the boys. She was so surprised to see two beautiful perfect little babies, yet so so tiny. My Mum and Dad where on their way as was my other sister and brother from QLD, they would arrive Wednesday.
Scott headed home on Monday night, I slept well, still afraid that my boys might die, however I was trying hard to be positive. At 5.30am on Tuesday 17th of September I had a knock on my door, it was a NICU Paediatrician. I was informed that both Bailey and Ethan had suffered Pulmonary Haemorrhages overnight and although they where currently stable they both needed to have cranial ultrasound’s to determine if they had suffered any bleeding on their brains. I was devastated, I just wanted Scott, I was alone, confused and scared. I telephoned Scott, he quickly made his way to the hospital. Scott visited the boys, we then sat and waited for four hours until the ultrasound’s where done. They didn’t know what damage could have been done, it may have affected them badly, it may have affected the way they walk the way they talk, the haemorrhage may have permanently disabled them, we where devastated, our life seemed to be in ruins, how could we cope. The boys where finally given the all clear and that was such a relief, it just couldn’t get any worse, surely not, they have suffered so much.
It was around lunchtime Scott decided to go home and spend time with Matthew, I tried to rest, my mind was spinning. At approx 3pm, I received a phone call informing me that I was to come down to the NICU straight away. I fell apart, I knew something was wrong with our boys, one of them, both of them I didn’t know. I imagined Ethan was in trouble, as Bailey seemed to being doing okay. I didn’t want to go, the nurses said I must, so they wheeled me down, I can only remember saying no!no! the whole way, please no! I was taken to an area where I was met by a NICU Paediatrician and Nurse, they sat down next to me. I didn’t want to hear what they where about to tell me, I was on my own, I just couldn’t bear it, all I wanted was Scott. I asked them which baby, and they replied, Bailey, I was shocked. They informed me that Bailey had deteriorated as a result of his massive haemorrhage and had required 100% oxygen. They where struggling to maintain his blood pressure and that his heart had stopped several times, the only way to keep him alive was by cardiac massage and that I should let him go. They said there was nothing more that they could do and advised me to go and spend some time with him. The pastoral care lady was called and I was asked if I wanted Bailey baptised, this was all too much, I didn’t want him to die. I was told that I only had approx 15 minutes. I entered the NICU, on one side of the room lay Ethan struggling to survive, and on the other was his twin brother Bailey, our son, who was about to lose his battle. I held Bailey’s hand, I told him that I loved him and always would, that Daddy, Matthew and Ethan loved him and that we would never forget him. I feared that Scott would not arrive in time to say goodbye to Bailey, the nurse continued cardiac massage until Scott arrived. I encouraged him to hold Bailey’s tiny little hand. The nurse continued cardiac massage as we said our final goodbyes.
The nurse ceased the massage and Bailey’s heart dropped to 70bpm. I requested that he be brought over to Ethan to be together. They lay him next to his brother for a final time. Bailey was placed in my arms wrapped in his special quilt, I kissed his tiny nose, he was so cold. Scott held Bailey and said goodbye and placed him back in my arms where he died, surrounded by the warmth and love of his Mummy, Daddy and identical twin brother. Bailey was farewelled on Thursday the 27th of September 2002, it was a heart wrenching moment in time we shall never forget. Ethan continued to grow stronger by the day and overcame all odds to survive, he today carries on his brother’s legacy. We brought Ethan home on 04 November 2002, 50 days after his birth. Ethan today is a healthy little boy, who has brought so much joy to our lives. Ethan you have given us the strength to carry on, you have eased our sorrow and grief. Bailey you touched our hearts in such a way that we feel so blessed to have had you. Our time together was short, however the love the joy and the hope you brought to us shall last forever. Rest in peace our sweet little boy, we miss you dearly.
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