12 sgan wythnos – Where our journey all began!
Y rheswm yr wyf yn awyddus i ysgrifennu erthygl hon yw bod yn ystod fy beichiogrwydd cynnar, Roeddwn yn teimlo'n rhwystredig iawn am y diffyg gwybodaeth a roddwyd i mi neu y gallwn i ddod o hyd ar y rhyngrwyd am y canlyniadau darlleniadau plyg gwegilog uchel. Felly yr wyf yn gobeithio y bydd hyn yn ddefnyddiol i rywun allan yna….Teimlwch yn rhydd i ysgrifennu eich stori eich hun (gofrestru isod).
Mae'n ofid i mi hefyd gan y nifer reportedly uchel o fabanod wedi'u herthylu pan diagnosis DS. Tybed os yw rhai o'r penderfyniadau hyn yn cael eu gwneud yn rhannol o ganlyniad i gwybodaeth gamarweiniol, diffyg gwybodaeth, geiriad difeddwl ar adeg diagnosis, rhagfarnau cynnil, ac ati. The choice of words from the medical staff is hugely important. Think about the difference between being told: "Rwy'n ofn i ddweud wrthych, y ffetws uchel risg o gael Downs Syndrome "o'i gymharu â" Mae'r prawf yn dangos bod y ffetws siawns uchel o gael Downs Syndrome. "Y datganiad cyntaf yn cyfleu agwedd negyddol cynnil yn hytrach na nodi dim ond y ffeithiau, heb unrhyw ragfarn.
Mesur gwegilog Plygwch
Yr wyf yn cofio yn eithaf clir fy mhrofiad fy hun o fy 12 sgan wythnos. My partner (oed 35) ac yr wyf (oed 32) aeth i lawr i'r ysbyty, gwisgo mewn lledr ar feic modur, filled with excitement and anticipation of seeing our first born for the first time. I only had a slight pang of fear that he/she might not be alive and that it would all be over before our journey into parenthood had begun.
Fy ond yn deall pam ein bod yn cael sgan oedd:-
- Mae pawb arall yn gwneud - felly mae'n dim ond beth gofal iechyd safonol yn ystod beichiogrwydd.
- I bennaf gweld bod y ffetws yn fyw ac yna i fesur ac amcangyfrif y dyddiad dyledus y beichiogrwydd.
Nid yw fy mhartner na minnau wedi cofrestru y ffaith y byddem yn cael prawf penodol; doedden ni ddim yn gwybod beth y 'prawf gwegilog blygu' oedd ac nid wyf yn siŵr ein bod yn gwybod erioed oedd yn mynd i gael ei wneud?
Anyhow, there I was on the scanning table. As they placed the scanner on my stomach, Rwy'n cofio croesi fy mysedd yn dawel, hoping that the baby would be found alive. As the image came up on the screen in front of us, Roeddwn yn swyno - roedd ein bach, ond perffaith baban bach yn gwneud bownsio a chnithiau a diolch byth yn fyw! I felt relief, joy and amazement watching him/her and suddenly very protective of this little person. For me the pregnancy suddenly became very real; hyd tan hynny, nid fy greddfau mamol wedi cicio mewn gwirionedd yn, ond ar y pwynt hwnnw yn sicr yn gwneud! The sonographer started measuring various things – body length, lled, femur length and head circumference were all noted down and some unknown measurement at the back of the head – the nuchal fold as we were to learn. Still marvelling at ein plentyn (!) ar y sgrin, Nid wyf yn wir yn talu llawer o sylw gan fod y 2 sonograffwyr sibrwd rhwng eu hunain ..... ac yna rydym yn clywed 'A ydych yn mynd i ddweud wrth ei, neu bydd yr wyf?'
Dywedwch wrthyf beth??? !
The senior sonographer explained something about the measurements they had taken gave us a high chance that the foetus had Down Syndrome. I asked how high a chance and she said 1 yn 2 ac rwy'n cofio dweud, syfrdan yn hytrach, ‘Wow…’ She gave us a computer print-out of the calculations made and I noted that our nuchal fold measurement was 13.2mm ac nid oedd hyd yn oed yn ffitio ar y graff, a oedd yn y-echelin mai dim ond aeth i fyny i 6mm! Hefyd, roedd dau Trisomies eraill a restrir - Trisomy 13 a 18 sydd hefyd yn rhoi i ni risgiau uchel o tua 1:15 - 1:20 as I recall. I asked what these Trisomies were and the sonographer could only tell me that one was also known as Edwards Syndrome (Trisomy 18) ond naill ai un yn cael ei ystyried 'nad ydynt yn gydnaws â bywyd,'Sy'n golygu y baban yn annhebygol o fynd i'r tymor llawn, ac os gwnaeth, dim ond mater o oriau * byddai'n byw ( Cefais wybod yn ddiweddarach roedd hyn yn ffeithiol anghywir-gweler isod). Wow again….how awful, sut derfynol .... sydyn Trisomy 21 seemed a much better option. As we got up to leave, I thought to ask whether there was anything else that could give this high nuchal fold reading. The sonographer replied, 'Cwestiwn da ..... Dydw i ddim yn siwr ... Rwy'n credu efallai problemau'r galon ....'
We were then ushered to a private waiting room to speak to an obstetrician in more detail. We don’t remember so clearly what was said in that room as we were in disbelief and I guess shock. I remember the female obstetrician, who apologised for keeping us waiting. She asked if a female junior doctor could sit in, and I think the third person present was a senior nurse. I don’t remember getting any answers to my previous query about what else might cause such a high nuchal fold reading (am atebion gweler isod). I think the obstetrician said that the combination of the femur measurement and the nuchal fold measurement meant the diagnosis was likely to be accurate. She mentioned CVS (Villi corionig Samplo) ac amniocentesis (o 15 wythnos) y gellid eu cynnig i gael gwybod yn sicr os y ffetws oedd Trisomy o ryw fath.
Pa ddau ohonom Gall gofio'n glir yw nad oedd disgwyliad gor-redol y byddem yn cael erthyliad ac os ydym wedi bod eisiau i, gallem fod wedi gwirio i mewn i'r ysbyty ar y fan a'r lle i fod wedi ei wneud! Even though it certainly wasn’t the first option in my mind, I felt compelled to ask a lot of questions to find out the facts about abortion – being a biologist myself, I needed to know all the details before I could consider it as a course of action. I naively thought that it would simply involve taking a pill and it would all be over. I was horrified to learn the facts. Needless to say, Cefais fy synnu gan yr hyn a ddywedodd wrthyf, all options sounded awful and knew I wouldn’t be able to live with myself.
Mae'r holl tra fy mod yn mynd i'r afael â'r realiti difrifol o'r hyn mewn gwirionedd yn golygu erthyliad, I remember the junior doctor looking at me sympathetically with tears rolling silently down her cheeks. I remember thinking why are YOU crying; sicr dylai fod ME pwy sy'n crio?! Although I shed a few tears when trying to voice my more difficult questions, yn bennaf roeddwn yn teimlo fferru a sioc a bod erthyliad bendant nad oedd i mi a pham mae'n ymddangos i gael eu cynnig mor ddidaro a mater-o-factly? Yn fy meddwl, ar ôl rhyfeddu at y neidio y tu mewn i mi, I just couldn’t contemplate making the decision to end that life. That was the thought that scared me the most.
I was clear in my mind that we needed more information before we could possibly make any decision. Therefore, we were booked in for CVS the very next day. The risks of possible miscarriage that she spoke of (2% gyfer CVS a 1% gyfer amniocentesis) seemed negligible in the face of being ‘non compatible with life’ or being aborted. I had also made the decision that I could only consider abortion to be an option if I was told with absolute certainty that the baby could not survive independently of hospital machines.
Unwaith y cartref, Cawn yn syth ar y cyfrifiadur i chwilio am fwy o wybodaeth i fy gwestiynau heb eu hateb:-
Q1. What was a nuchal fold/ nuchal translucency scan actually measuring?
Ateb: Mae lled y gofod hylif llenwi o dan groen y babi, at the back of the neck. See scan photo above – gallwch wneud allan linell wan fel cwfl neu swigen dros ben y babi.
Ar ddod o hyd i hyn, Oeddwn yn hyd yn oed yn fwy pryderus, mor sicr roedd hyn yn golygu bod ein baban pen afluniaidd iawn o gymharu â'i gorff? Y term meddygol am y cadw hylif yn oedema (UK) neu oedema (Unol Daleithiau).
C2. A allai ddarllen plygu mawr gwegilog gael ei achosi gan unrhyw beth arall neu gyfuniad o bethau?
Ateb: Oes, llawer o bethau - rhestr cyn belled â bod eich braich, that weren’t even mentioned to us. The reason they are not mentioned is that the most common causes are the Trisomies but there are many other conditions that could be the cause/ or adding to the oedema (hylif chwyddo). Examples – heart defects, Exomphalos, Parfofirws, Turners Syndrom, arennau polysystig, rhwystr yn y coluddyn, Spina Bifida, ac ati, ac ati.
Q3. Had anyone had such a large nuchal fold measurement as ours? Yn fy meddwl, po fwyaf y darlleniad, y gwaethaf mae'n rhaid i'r prognosis fod yn? How was the foetus even able to survive with so much fluid yn ei ben? The largest readings I could find on the internet were 6mm and our reading was more than double that!
Rydym yn mynd am y CGG y diwrnod nesaf yn St Georges Ysbyty, Tooting. The expectation that we would have an abortion continued: The doctor performing the CVS, er bod 'n glws ddigon, Dywedodd, a dyfynnaf: 'Rwy'n meddwl y byddwn i gyd yn gallu byw gyda ein hunain yn well, if we know for certain.’ By this I assume he meant, Gallai yr ydym yn byw gyda ni ein hunain am fod wedi terfynu baban ein bod yn sicr wedi cael Trisomy, although he was not specific as to which one. Unwaith eto,, Rwy'n cofio teimlo'n ddryslyd braidd fod y lle o arbenigedd meddygol, lle mae pobl yn mynd i gael ei wneud yn well, seemed so ready and willing to end a life. He was however able to give me some clarification/ hope. I asked him had he ever seen a nuchal fold reading as large as ours, as it seemed dauntingly huge. He said he had and that there was even a possibility that the child could be ‘normal’. There was also a chance it could be a diagnosis of Turner’s Syndrome. I saw on the paperwork that we were given afterwards, ei fod wedi ysgrifennu 'rhieni wedi cael gwybod bod 70% siawns o ganlyniad anffafriol.’ I’m not sure what he exactly meant by this.
Ychydig ddyddiau yn ddiweddarach, the telephone call came. In my heart of hearts I somehow already knew, hyd yn oed cyn y nyrs ar y ffôn dywedodd "Ydych chi'n eistedd i lawr….? The CVS test confirms that the baby has Downs Syndrome.” I wasn’t sad, Doeddwn i ddim yn synnu, Yr oeddwn yn falch nad oedd yn un o'r Trisomies eraill, hystyried yn 'heb fod yn gydnaws â bywyd' * (gweler isod). Now all we had to worry about was whether the baby had any other health issues and whether the excess fluid in its body would resolve itself. I was scared that my baby might not make it but I felt very, very relieved that I no longer had to make that decision. It was down to Mother Nature now.
Diolch byth,, over the next few weeks the fluid did reduce and by week ~24 it had disappeared altogether. We were also having regular heart scans which initially showed a ‘leaky heart valve’ that was allowing some blood back the wrong way but this also resolved itself by ~35 weeks gestation.
Mae fy merch ei eni yn fyw ac yn iach yn 38 wythnos + 2diwrnod, a healthy 6lbs 7oz. She initially had a small hole in the heart, a elwir yn fforamen Patent fforamen (fel y ~ 10 – 20% o'r boblogaeth yn gyffredinol) ond mae hyn wedi cau yn naturiol gan ei 1st pen-blwydd. Other than coughs and colds in the winter and some minor skin issues, hi yn diolch byth mewn iechyd da.
* Rwyf wedi dysgu ers nad yw hyn yn hollol gywir a bod pobl yn byw gyda'r ddau amodau, am fwy o wybodaeth ewch i: http://www.trisomy18.org neu http://www.trisomy.org
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