TTTS - A true story... by Margaret Blizzard

Terry and I had been together for 14 years when we decided we definitely  wanted children. Terry had had a vasectomy during his previous marriage so the first step was to enquire about reversal. This was carried out successfully at the Priory Hospital costing £1,500. 2 more years of tests investigations, folic acid taking and treatment on myself then followed, at the end of which we were advised by Mr Afnan at the Birmingham Women’s Hospital that we should opt for fertility treatment.

We did not expect to be offered the treatment straight away so it came as a shock to be told we should plan to start during my next full cycle. We had a holiday of a lifetime to Florida planned and were taking Terry’s Mother who had just celebrated her 75th birthday. So we had to borrow the money off Terry’s mother because all our savings had just paid for our holiday. We paid for the treatment in October 1998 and planned to start treatment in December. Whilst on holiday in Florida in November I discovered I had become pregnant naturally, thankfully we were able to get our money back!

I am 38 and my husband Terry is 48 so you can imagine how anxious we were to make sure all was well with the baby. My GP contacted the hospital immediately and requested an early scan. The scan was carried out the week before Christmas and showed two babies, which came as a great shock as there were none in the family on my side. We were told I was 11 weeks pregnant and were given an expected delivery date of 17th July 1999, however, this was for a single baby and full term for twins is normally 37 weeks which worked out as 24th June 1999.

We went away ecstatic, clutching two scan pictures of nothing much but we knew what they were. The family was overjoyed and although I suffered tremendously with sickness (not just in the morning), I could not have been happier. The prospect of having two babies had obviously not sunk in. We had decided to have the amniocentesis test to check all was well with the baby but as there were two we changed our minds. The test would not conclude whether one or both babies were affected, if any, and we decided against taking the risk. By late January I looked huge and was decidedly uncomfortable, my bladder felt full all the time and it felt as though I could not empty it.

Monday 1st February 1999
I went to my GP (not the doctor I usually see) and explained my discomfort, he checked me over and felt my tummy and told me not to worry  that it was my muscles and bones adjusting to my expanding middle. The student with him looked suitably impressed with his diagnosis. I went away still uncomfortable but reassured.

Wednesday 3rd February 1999
I was in agony and had been awake all night in tears with the pain from my stomach, I still could not pass water and returned to the GP surgery insisting on seeing my usual doctor. She checked my tummy and said she was not happy and contacted the hospital, I was now in my 17th week of pregnancy. They called me back to see my consultant, Mr Podmore.

Friday 5th February 1999
I was scanned and the Radiographer said my bladder was empty, she made her report but would not tell us anything and insisted on us seeing the consultant again. Mr Podmore explained that there was problem and that there was a possibility of losing one, if not both babies. He went on to say that it was not his area of expertise and he would refer me to Mr Mark Kilby in the Foetal Medicine Team. This was at 11.30, Maggie Rylance, a Foetal Medicine - Specialist Nursing Sister, told to us that we would have to wait until 14.30 to see Mr Kilby. She explained he had clinics and meetings to attend and did not want to fit us in in-between, he wanted to spend as much time as necessary with us without interruptions and needed to carry out a detailed scan.

We met Mr Kilby and his team and they were all wonderful. Mr Kilby carried out a detailed scan and we were asked to remain silent in order for him to concentrate. He identified a pool of fluid 15 cm deep and went on to explain the significance and TTTS to us and the possible treatments, outcomes and all the risks involved. I was given some tablets to help with the pain and prevent the recipient twin producing fluid over the weekend. We were then left alone for an hour to contemplate our options. We were advised to go home for the weekend and think things over. We were given an appointment for the Monday and they would carry out our wishes (whatever we decided) then.

The weekend was the longest of our lives so far and neither of us slept much at all. We cried ourselves to sleep Friday and Saturday. On Sunday morning I awoke with a cold, it was then I decided this was not going to beat us and that these babies were going to be here. Terry and I had discussed  our options and we obviously decided to do whatever was necessary to give our babies the best possible chance.

Monday 8th February 1999
On our arrival at the hospital we told Mr Kilby we had opted for the amnio reduction, as he had advised. The team gathered around as I lay on the couch, Dr Bill Martin would carry out the procedure assisted by Maggie Rylance and Sandy Smith. The positive attitude of the team kept us going through those early stages and played the biggest part in the eventual outcome. The procedure was not particularly pleasant but they made me as comfortable as possible. 1½ litres of amniotic fluid was drained from the recipient twin. The donor twin was a ‘stuck baby’ on the wall of my uterus.

I could see all the procedure on the monitor at my side and Terry held my hand (his own was shaking) throughout. I was then admitted over night and a scan scheduled for the next morning. I passed the time knitting matinee coats for my babies. The scan the next morning showed all was still OK and I was allowed home and told to take it easy for a further 24 hours. As I had had to have amniotic fluid taken anyway we decided that it would be just as well to have the tests carried out to identify whether there were any chromosomal defects. Thankfully they all eventually came back negative.

Instructions were placed on my hospital notes to the effect that if either pool depth was measured at 9 cm or more then the procedure should be repeated.

Wednesday 10th February 1999
Scanned again, maximum pool depth 8 cm on the recipient twin and the donor 4 cm, the doctors were much happier with this but could still not see a bladder on the donor.

Friday 12th February 1999 – 18 weeks
I was uncomfortable by Thursday evening. The pool depth on the recipient twin had risen to 12 cm and the procedure was carried out again. A further 1½ litres of fluid was drained and another overnight stay followed. I continued to be scanned three times per week, Monday, Wednesday and Friday.

Friday 19th February 1999 – 19 weeks
Maximum pool depth of 11 cm on recipient, 6 cm on donor, a further 1½ litres was drained from recipient.

Monday 15th March 1999 – 22 weeks+ Procedure carried out again and abandoned after 1 litre of fluid was removed. The recipient twin had become curious and had reached out for the tube that is passed through the syringe to take the fluid. At 22 weeks both babies could be seen clearly. Their hands and feet were moving around, you could see their eyes and noses, one of them even waved during one scan and seemed to be saying, "Hello Mom and Dad, see you soon".

We did not want to know the sex of our babies, the amnio test would have told the medical team what sex they were but they respected our wishes and it did not slip out. We were convinced they were boys anyway and had already chosen boys names. Each time the procedure was carried out there was a chance of bringing on miscarriage, and each time we remained positive. The hospital team had begun to use us as a case reference for any other sufferers and had asked if we minded talking to other couples prior to them making any decisions on treatment.

Things seemed to settle down then and although I attended the hospital for scans and then traces three times a week, all remained well.

At 28 weeks I was given a steroid injection to help develop the babies’ lungs just in case they decided to come early. Over the next few weeks I had detailed scans on the babies’ head, heart and other major organs and nothing untoward was identified. My expanding middle meant it was particularly difficult for me to do much and although I felt well in myself I was advised to take it as easy as possible. My ankles and feet were the most uncomfortable and had blown up with water so much I could not get any of my shoes on, I had to invest in a pair of ‘comfortable’, expanding, open sandals.

Because of the condition I had and the amount of visits to hospital per week I had not worked from my 17th week onwards when TTTS was discovered. My best friend Anne had lived through every day with me and had never let me feel sorry for myself. She prayed and lit candles for my babies and myself and visited every opportunity she could. She stayed for weekends to keep me positive and although I would not buy anything because I was superstitious, she made me look at all the wonderful things we would buy for the babies once they were here. She did all this even though she was very ill herself and never once complained. I owe Anne a lot.

Friday 28th May 1999 – 33 weeks

Scan showed again an excess of fluid and I was admitted for observation. Mr Kilby advised me that I would not now be allowed home until after the babies were born. He was already overjoyed that I had passed the 28 week hurdle and said that at 33 weeks the babies had a much better chance. He advised us that if the fluid level increased again they would have to repeat the reduction procedure.

Up until now I had kept a most positive attitude to the treatment I was receiving and knew in my heart all would be OK, but this time I felt different and voiced my concerns to Terry. We discussed the options and decided that rather than have the treatment again we would opt for early delivery. However, the fluid reduced over the next day or so and although I had to remain in hospital and had a further steroid injection everything seemed OK.

Saturday 29th May 1999

After having contractions for a few hours over the course of the evening I was examined by the Senior House Officer. I was told that if my babies had to be delivered I would have to be transferred to an alternative maternity hospital because the neo-natal unit was full to capacity and my babies would most certainly need neo-natal care. Fortunately it was not needed and I hung on for a further week.

Friday 4th June 1999 – 34 weeks

Scan again showed an increase of fluid and Mr Kilby advised his Senior Registrar that if this happened again following the scan on Saturday my babies were to be delivered. I was not to be allowed to labour. The scan on Saturday showed a further increase, Mr Kilby was called at home and instructed the babies to be delivered, he also insisted on the Senior Registrar being there throughout and he was to be called as soon as they were here.

The delivery was planned to start at 18.30 as I had already had lunch. My mother and sister were visiting and could not believe it was finally going to happen (it had been the ‘longest’ pregnancy in history).

 
I called my father to tell him he would be a granddad again before the day was through and he cried.

I went down to theatre at 18.30 and received my anaesthetic a spinal block then Terry was allowed in. The whole process only took a further half an hour and Stella arrived first at 19:16 weighing 5lb 9 ozs, closely followed by Hannah at 19:18 weighing 4 lb 9 ozs. I did not see Stella as she needed oxygen but Hannah was passed by me to kiss on her way to be checked over by the paediatricians. After the clean and stitch up operation was complete I was left to recover and offered tea and toast. Hannah was again brought to me for a brief hold and photo on her way to the Neo Natal Unit; I had still not set eyes on Stella.

I slept fitfully that night and insisted on a shower and a trip down to the unit the next morning. When I saw them I could not believe they were mine. My eyes filled with tears, they looked so small and helpless and yet they were bigger than most of the other babies in the unit. I did not feel like a mother just yet because we were separated and could not wait until we were together.

Both babies were in incubators in SCBU and being tube fed. They were hooked up to lots of machines which frightened me at first but the nurses assured me they were all routine and not to be concerned. Stella looked very pale compared to Hannah but they said this was just her natural fair skin, she still needed extra oxygen.

I visited my babies regularly and throughout the night to deliver breast milk I had expressed. Sometimes it was just a teaspoon full but I felt it was important that they get as much goodness as possible and it made me feel part of them as well. I still felt like an intruder into their little world and that they were not my responsibility. The nurses were all very good and made me feel as welcome as they could but I was limited in what I could do for them. I would sit for hours just watching them, knitting for them and waiting for the next feed time to come round so I could change and feed them (albeit through a tube) but it made me feel needed.

Wednesday 9th June 1999

I awoke in the early hours feeling that Stella was calling me. I went down to the neo-natal unit to see her and Hannah had been moved to a different room to make way for another baby. They had been separated for the first time in their little lives and I had felt it in my sleep. I assured myself all was well and returned to bed.

When I again awoke I felt very tearful and identified it as the ‘baby blues’ and I called my mother about 9:30 am for a chat. She listened is she always does and said she would be in later. That same morning, whilst topping and tailing my babies, I was asked by one of the neo-natal nurses whether my husband would be visiting today. He explained that the paediatrician would like to talk to us about routine scans that had been carried out on one of the babies. I called Terry who arrived 15 minutes later.

Dr Durbin was accompanied by one of his paediatrician colleagues who had been present at the birth. They took us into a side room and explained that Stella had renal failure. When we asked what this meant the doctor explained all about createnine levels in the blood measuring the level of kidney function, he explained that a normal healthy baby’s level would be 30 and that Stella’s was 250 at birth and had risen to 518 by that day.

We were devastated. The doctor went on to explain that Stella would not thrive and was only likely to survive for a few weeks. When we asked if we could take her home he responded that if she survived up until the 37th gestational week then we could take her home to die.

I now knew I was a mother, because this HURT. We were told that Stella had been referred to the renal team at the Children’s Hospital and that a doctor from there would be here to see us later in the week. As we left the room we were in shock. We immediately went to Stella’s incubator. She lay there not knowing and we wished we didn’t. It was more than I could stand.

I had to go home for at least a short while; I had to get away from the hospital and all it stood for. Terry took me home and I went to the newly prepared nursery. I tried to imagine only one cot being occupied but couldn’t. This was not happening. A neighbour who is also a close friend called around after seeing the car outside, we explained things to her, and she had lost her son at 18 months and knew to a certain extent how we felt. I asked how you prepare or cope with the loss of a child and she replied, "You just do, I don’t know how, you just do".

After seeing my mother we returned to the hospital, I wanted to be with my babies for as long as possible. At 10.30 that night I sat outside, on the wall of the car park to the hospital and called Anne. I did not know what to say so I just said, "I’m going to lose one of my babies", she thought at first it was the baby blues and tried to reassure me, but then I explained. She wanted to come to me but I said no, I just needed her to talk to. Anne visited everyday from then on whether she was well or not and kept me focused.

We would sit in the staff canteen and talk about all the things we would do with the girls when they were older. I asked Anne to be a Godmother, she accepted without hesitation and cried.

The days and nights dragged by. Terry and I spent every minute we could with the girls. It was hard for him, he had to go home to an empty house every night (apart from the two cats) but I could see them anytime. He had become the proud Father and loved showing visitors to the unit where the girls were and pointing out their little differences. He even changed one of them on one occasion when he visited the unit without me.

On Friday I had an impromptu visit from Dr Milford from the Children’s Hospital. He talked for a long time but I did not take much in. He did however give me some hope and reported that Stella’s blood chemistry had improved and not to give up hope. He talked about dialysis and certain drug preparations they would start her on immediately. She was prescribed special supplement milk and other drugs that would hopefully help her cope and build her strength for the months ahead. If medical intervention was necessary she needed to double her birth weight in order for them to do anything for her.

Friday 25th June 1999

Stella had made it to the 37th gestational week and we were allowed home. Reality hit me on the first night of sleep depravation and has only just improved. Stella has been back and forth to the hospital for her renal checks and now also for her cardiac checks, since discovering she has Arterial Septal Defect (hole in the heart) and Pulmonary Stenosis (abnormally developed pulmonary valve) back in December. We are assured that these defects are manageable and that they will be dealt with in the future as and when necessary.

Stella and Hannah are now 10 months old and the joy of our lives. They are crawling, toppling over and ending up looking battered and bruised. Hannah is standing and will be walking by her 1st birthday. They are both happy and contented babies and Stella has no outward signs of her difficulties.

Stella’s createnine level has now reduced to 75 at her last check up in February, which the doctors are extremely happy with. Her last scan showed her kidneys to be very small and have abnormal tissue within them, which is not kidney tissue.

We still do not know what the future holds for her, however, if she needs a transplant an identical twin could be the medicine she needs. Dr Milford has said he doesn’t think she will need any major treatment for the next 5 years at least and hopefully not throughout her childhood. Stella is treated the same as any other baby. We do not make allowances because none are necessary; she can shout and cry, smile and laugh like any other baby.

After reading some of the other stories on the TTTS Foundation and twin2twin websites and in correspondence we have received from Cindy Boudreaux, Special Needs Co-ordinator for the Foundation, we realise just how lucky we are and what a miracle they are.

We cannot thank Mark Kilby and his team enough for the care and consideration shown to us throughout the most difficult time of our lives. We know Mark was ecstatic when both babies were born successfully and we keep in touch whenever we attend the hospital.

We hope our story can give hope to other victims of this terrible condition. We also hope and pray that our girls remain as healthy as they are today as an example of what can be done with the right help and support and a lot of praying.

Terry and Margaret Blizzard

Proud and tired parents of Stella and Hannah Blizzard

UPDATE

Margaret sent us the following update on Stella and Hannah's progress:

I am also pleased to confirm that both girls are thriving (touch wood), and that Stella has continued to have increased kidney function at each of her check ups since I wrote the article. Her createnin level which started at 518 at four days old (near death state) is now down to 59 (80% normal). Her doctors are amazed with her progress and she has proved she is a fighter and will have the strength to face whatever the future holds for her. Stella has a slightly restricted diet which does not pose too many problems at the moment and will be returning to the hospital for her next check up in July. I am also pleased to announce that Stella has resolved her heart defects herself, further proof of her fighting spirit.

3rd March 2001
Stella had a further check up on her heart. As we arrived at the hospital she fell asleep in her pushchair which meant we would have to wake her for her scan which was not a good idea! We were called in for her appointment but when the nurse realised she was asleep said to leave her and they would wait until after her scan.

We were called through and I was asked to undress her, this I did as gingerly as possible so as not to wake her. I managed to undress her without waking her and waited with baited breath for the scream when the cold jelly on the probe touched her tummy. I need not have worried, I think I could have stuck pins in her and she would not have woken. She had decided that it was her sleep time and nobody was going to stop her.

The radiologist was pleasantly surprised at her sleeping and was able to get a good scan of everything he needed. Once finished I managed to half dress her before she woke and only then for a few seconds before falling sound asleep again on Daddy's shoulder. We returned to the waiting room for a further 2 hours. In the meantime Hannah had had her sleep and both children were now playing happily in the waiting room.

We were the last family in the waiting room at 4.30pm when we were called through to see the consultant Mr Wright. He told us there was nothing on the scan for us to be concerned of and that the hole had closed up. It took a few minutes to register what he was saying, my bottom jaw was hanging in the wind and all I could think of saying was "Oh"!

I then asked about the 'other thing', "You mean the arterial septal defect?" he said. "Oh that's OK as well, no sign of a problem now, in fact, if I was seeing this child for the first time I would have said this was a perfectly normal heart".

You could have knocked me over with a feather! My heart was pounding and I couldn't help myself, I picked Stella up and held her so tight I think I hurt her. I was kissing her and telling her what a clever little girl she was and how she was a fighter and wouldn't let anything stand in her way. The consultant must have thought I was mad but let it pass and we walked out of the hospital in a daze.

My first action on leaving the hospital was to call my mother and reduce her to tears. My sister reacted the same way and called me a cow for ringing her at work and making her cry.

Mr Wright wants to see Stella once more in two years time just to be on the safe side.

31st March 2001
Stella was taken ill in the night. Over a six hour period she was sick 18 times. Very weak and dehydrated we arrived at casualty the next morning. The consultant on duty was taking no chances and made sure all of her kidney checks were carried out. They took blood and water samples and gave her a thorough examination. Her blood tests came back fine and we were told it was just a virus and to take her home. Relieved we returned home and continued with the washing. At 2.30am the next morning Hannah went down with the same virus, the results were very much the same and I was a total wreck by 8am.

2nd April 2001
Stella was due at the Renal Unit at 10.30 but as Hannah was still quite poorly Terry took Stella and I stayed at home. The doctors were again very pleased with her progress and her blood results. She could now discontinue the Kindergen PROD (prescription formula milk especially for babies requiring Peritoneal Rapid Overnight Dialysis (PROD).

Her creatnin level which had started at 518 at four days old (near death state) is now down to 59 (80% normal). Her doctors are amazed with her progress and she has proved she is a fighter and will have the strength to face whatever the future holds for her. Stella has a slightly restricted diet that does not pose too many problems at the moment and will be returning to the hospital for her next check up in July.

The girls celebrated their 2nd birthday at nursery on the 5th June 2001 and are being Baptised on Sunday 17th June. There will be at least 100 guests at their baptism celebration, we just hope it is a dry day, otherwise the bouncy castle in the garden is going to be a lot of fun!

Still living in hope and praying but a little more relaxed and rested.