TTTS Parent Stories: Shaiarn Leslee and Jazmynn Shaiarn
Twin to twin transfusion syndrome a disease of the placenta that can affect identical twins. There is no known cause for it and it can't be caught or treated.. Just briefly it is the uneven distribution of blood between twins.
There is a donor twin (receives less blood) and a recipient twin (receives extra blood). The recipient twin has extra stress on the pulmonary system with the extra blood and risks dying of heart disease while the donor is left with low blood/nutrition supplies and may die from malnutrition. More than often the donor twin will survive the longest.
I lost my daughter, Shaiarn Leslee, to this at 23wks gestation, and carried her and her sister, Jazmynn Shaiarn, until 37wks. What's unusual here is my surviving twin is the recipient. I think we were lucky ; we were always well informed about the risk of this among others. Not all women carrying identical twins are.
Before the girls were born I was an emotional wreck. I was terrified I could still lose the remaining twin. I was confused about what had happened and what was next, would the labour be harder, would she be deformed, would I feel resentment toward her, would I cope with seeing the deceased twin, & very much more. I don't think that my loss was in any way easier or harder than anybody else who has lost a baby, but can you even imagine trying to celebrate & grieve at the same time. Balancing your feelings of gratefulness for what you didn't lose with the cheated feelings of what was taken away. Trying to make sure you don't feel too little or too much of any emotion so that you don't get the guilts up on yourself.
I was admitted into hospital 2 days before the birth. The decision was made to induce my labour. On the day, the doctors informed me that I would probably need to consider a caesarean or epidural to be able to get my deceased baby out. They said she would not birth "normally". Whatever normally is, in this situation. As frightful as it was, they really weren't sure about anything. I was lead to believe, all along, that I wouldn't need to worry about the second baby; I would only have 1 child to birth. It was only the day before that I was informed that I would have a stillborn to consider. I was devastated. 2 previous children, both 9pd 2, completely natural & not a hitch. My baby was only expected to weigh 5pds, if that; & my first gynaecologist said that with only 1 baby remaining, there would be no further complications. They later decided that I knew myself best & that they would follow my lead. At 11.30am I had the drip inserted & irregular tightenings started almost straight away. Contractions started somewhere just after 4.00pm & by 7.00 they were regular & strong. At 8.00 the doctor came in &, after a quick examination, said that they weren't far away & there shouldn't be any problems.
At 8.19, I heard a sound that I had been waiting, what felt like an eternity, to hear. Although it was fairly quiet, I heard my baby for the first time. She was lifted to my chest, with my husband by my side, I cried, trying to concentrate only on the fact that she was here & we could hold onto her. I must admit, at this stage I still wished that I would wake up from a terrible nightmare to find that I had 2 babies to hold onto & care for.
The 2 girls were birthed so close together that I didn't actually realize that Shaiarn had been birthed (stillborn). Prior to that we hadn't made a choice about whether or not we wanted to see Shaiarn. I hope no one thinks I'm heartless, but we chose not to see her, & to focus on Jazmynn & her well-being. I'm now able to look back & know that it was the better choice & that we wouldn't have been able to cope at that time. . Jazmynn was taken by the midwife, about 10mins after that to the Special Care Nursery. She had a small amount of jaundice, low body temp. & blood sugar levels but, somehow, managed to weigh 5pd 2. She stayed there for 4 very long days, then spent 3 days on the ward with me.
Two weeks later, Shaiarn had a funeral. A beautiful service & burial organised by the hospital. They also put together a little book with Shaiarns weight & measurements, foot & handprints & photos. I have since looked at them, which stirred up a lot of emotions & questions. Confusion again about What & How it had happened, Why to me, & How she could look so normal but not be alive. And then there was the guilt about whether or not I caused it & How, as a mother, I could not look at her. We agreed to a post mortem & I have been working with a counselor which has helped to put a lot of questions to rest. Also, support from my husband & family has kept me unbelievably stronger than I ever thought I could have been.
I often hoped that after the birth it would put an end to a lot of my concerns, but my emotional roller coaster ride continues still. I know that there is a long road ahead faced with such uncertainties of whether or not Jazmynn will blame us & if there are any problems that will affect her as a result of the complications (Cerebral Palsy to some extent is a very real possibility). She is only 5mths old but she is growing so very strong with every day that passes, & seems to be quite intelligent & aware of everything that happens.
Though there will always be the 'What Ifs'; Would another doctor have treated me different with a different outcome? What if the girls were both birthed when the problem was first detected? What if Shaiarn could have held on for a bit longer? etc; I am realistic, knowing that this pregnancy didn't end in the worst possibility, even if it didn't work out the best way we planned. The hardest thing now, is to find that other people have the attitude that they didn't meet her so she didn't exist.
To look at Jazmynn & know that there could have been 2 sets of bright eyes & smiles, it's a bit upsetting, but, it's also comforting to think that she holds the soul of her sister, & that I may have lost the chance to see any eyes & smiles at all.
They say that as each day passes, it will get easier. I can't really agree with that, because it hasn't. I can talk about what has happened without bursting into tears most times & it is heart-warming to see other mums enjoy their twins, but, I still visit a grave with my daughters name on it & I still have to explain to 3 children why there is no 4th. In spite of this, I can reassure you that I do have more good days than bad.
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