Parent's Stories Jacqueline & Christopher Giles - Blackpool, Lancashire

Charmaine, Chloe, Jackie, Chris, Christopher Jackie, 30, & Chris, 32, already had 3 children aged 6, 8, and 11 when they decided this year to have another baby. All 3 previous pregnancies had been without serious complications and all 3 children were in perfect health. In June 1997 Jackie became pregnant. By 8 weeks she was feeling sick and looked further on than normal. A midwife at the GP's surgery commented on this, and joked that she either had her dates wrong or was having twins! Jackie continued to expand and by the time of the first scan on Wednesday 29th October, she had severe backache, had dizzy spells, and looked full-term - at 5 months. At the scan twins were revealed and the radiologist expressed concern that one twin was about two weeks smaller than the other. Jackie and Chris were delighted about the twins and at the time not too concerned about the size difference. The following scan picture was proudly shown to relatives.

Note the larger lower twin and the upper "stuck" twin The radiologist booked a second scan with a more experienced doctor for the following Monday. Dr. took more time over the scan and advised that one twin was "stuck" and explained about Twin to Twin Transfusion Syndrome and the likelihood that both babies (identical twin girls) would be lost. She was asked by Chris what treatment was available and replied that nothing could really be done other than close monitoring. An appointment was made for the following day with Jackie's obstetrician. Once back at home Chris searched the internet for information about TTTS and discovered 'Twin Hope' and the 'Twin to Twin Transfusion Syndrome Foundation' homepages. It quickly became clear that treatments were available in the USA, although not much information was available for the UK. Emails were sent to the groups, and to Dr. Julian De Lia (leading laser treatment specialist, whose email address was discovered) Chris rang the hospital on Tuesday morning and got through to the midwife. He asked if TTTS had been confirmed and what procedures the hospital had in place for treatment. Again, he was told that the hospital could monitor Jackie closely and just "wait and see". He told the midwife about the information he had found and asked that the hospital find somewhere that Jackie could be referred to. By the time Jackie turned up for her appointment, the hospital had rung round and had booked an appointment at St. Mary's hospital in Manchester for Thursday 6th November. In the meantime, the Twin to Twin Transfusion Syndrome Foundation had emailed back with some contact numbers in the UK, including Correen Jackson in Middlesex, who had successfully attended Queen Charlotte hospital in London, under the care of Dr. Nicholas Fisk. Jackie was seen at St. Mary's by obstetrician Dr.Tracey Johnston. Dr. Johnston confirmed TTTS during the scan and explained that with no treatment, both babies would die within 4 weeks. The department at St. Mary's had experience with TTTS and Dr. Johnston had attended several conferences, both in the UK and abroad. Amniocentesis with Septostomy was recommended, and within 1 hour of the scan Jackie had 2.6 liters of fluid removed. The immediate results were that Jackie's back pain and swelling disappeared. Jackie & Chris stayed overnight at St. Mary's and the following day's scan showed that the larger baby's heart rate had reduced, and that the "stuck" twin appeared no longer stuck and was moving much more freely. The only apparent problem was that the smaller twin's bladder could not be seen. Jackie was also examined by Dr. Ratko Matijevic, who was performing research into placental abnormalities. That Friday evening Dr. De Lia phoned from America and was pleased to hear that treatment had been found. Monday 10th November for a further scan. This revealed both twins in good condition, heart rates fine, and both bladders visible. Further amnio was not required. Wednesday 12th November for a further scan which showed a pool of fluid of just over 12cm in the bigger twin's sac. A drain of 3 pints followed, with an overnight stay. Thursday's scan showed no further build-up, so home again. Dr. Sarah Russell took over the care as Tracey Johnston was off on holiday. Monday 17th November. The scan showed more fluid around the smaller twin due to the septostomy, but another build-up of fluid around the bigger twin of over 12cm again. Another drain, stop-over, and home. Thursday 20th November. This scan took longer, as more precise measurements of the twins were taken. Big twin weighed in at an estimated 1.2lb, small twin at 1lb. The data showed that both had grown, and suggested that the difference in size was reducing slightly. The results from the first amnio drain confirmed that all was OK with the chromosomes - no Down's Syndrome or other difficulties. Monday 24th November. Scanning showed another build-up of fluid, but Dr. Russell elected not to drain after confirming that both heart rates and blood flow through the cords were OK following a doppler scan. Thursday 27th November. The scan results required another drain of around 5 pints. After another overnight stay Friday's scan showed both twins OK. Tuesday 2nd December. Tracey Johnston was back from holiday and performed the scan. The bad news was that the bigger twin had died, showing signs of hydrops. The death was probably due to heart failure through the excess blood passed through. Smaller twin checked out OK. A new challenge now had to be faced. On the death of one twin the chances are that the other can continue unaffected and in fact improve in health. Worst case is that the problem that caused one to die can also affect the other. There is also a risk of blood clots from the dead twin passing through the placenta into the live twin, causing death or severe difficulties and handicap. Unfortunately, at only 24 weeks gestation there is little chance of a delivered baby surviving, so one must hope that gestation progresses safely. Jackie was started on a course of steroid injections intended to develop the live baby's health prior to pre-term delivery. Tracey recommended that Jackie be scanned daily for the rest of the week. The options were either for Jackie to stay in the hospital, or to commute daily. Neither option appealed, so it was arranged that Dr. Helen Miller at Blackpool Victoria Hospital, who had originally diagnosed TTTS, would perform the daily scans and report findings back to Manchester. Wednesday 3rd December. Jackie felt small twin moving at around 6.00am and then nothing all morning. The wait for Dr. Miller at the clinic seemed endless, as did the preparation for the scan. The doctors words after a minute's scanning - "Heart beat is fine", brought a wonderful sense of relief. All else checked out OK. Thursday 4th and Friday 5th December. Two more successful scans. Saturday 6th December. Dr. Miller had kindly offered to perform another scan on Saturday, and it was rather strange entering a deserted maternity unit. At this scan baby really performed - yawning, waving her hand, sticking her tongue out, swallowing, and practiced breathing. All good signs. The cord flow and fluid pool depth measurements were also favourable. It appeared that the death of the larger twin had certainly given the smaller a greater chance of survival so far. Monday 8th December. Dr. Miller noticed a slight fluid build-up around the twin and called Dr. Johnston in Manchester straight away. Jackie went down to Manchester for another scan, where Dr. Johnston confirmed signs of hydrops. A consultative appointment was made to discuss the options for Tuesday. So should nature now be allowed to take it's course with the seemingly inevitable outcome, or should an emergency c-section be performed, with all the associated risks to such a premature baby? At Tuesday's scan at St. Mary's, Dr. Johnston pointed out the hydrops within the baby's body. Dr. Miller had found slight traces on Friday, and more on Monday. The hydrops had now built up again and was around the stomach and heart areas. No traces could be seen around the brain, which was a good sign. An interview began with Dr. Johnston and peadiatrician Dr. Sims. Dr. Johnston pointed out the seemingly bleak outlook for continuing the pregnancy, and Dr. Sims painted a realistic picture of the chances of a 25 week gestational age twin baby surviving. Jackie and Chris elected for a planned C-section, which was to be performed the next day, Wednesday 10th December. Later that afternoon they visited St. Mary's special care unit for premature babies, and saw some very tiny 25 week infants. That evening Dr. Johnston came up to the ward with Dr. Ratko Matijevic, who would be performing the section, to discuss the probable events of the following day. Wednesday 10th December. Due to other emergency deliveries the section was not started until 1.40pm. Ratko made a point of staying on past his usual time to perform the operation. At 2.00pm Christa (the live twin) was delivered, followed by her twin sister Charlene, and gave an immediate small cry. She was taken to the infant recovery room for resuscitation and blood transfusion before going up to special care. Chris was able to see both twins that afternoon whilst Jackie recovered. Great debts are owed to the staff of St. Mary's for their attention during this difficult time, with special thanks going to Dr. Tracey Johnston, Dr. Sarah Russell, Dr. Ratko Matijevic, Dr. Craig Leitch, and midwives Sue, Caroline and Jude. Thanks also go to Dr. Helen Miller at Blackpool Victoria hospital who originally diagnosed twin to twin, and was later able to assist with treatment. Christa's Story