#1

Erdenkind Isabella (Ullrich-Turner-Syndrom)

in Erfahrungsberichte 18.04.2011 10:05
von Ces | 3.118 Beiträge

Heute erreichte mich per Email der Erfahrungsbericht von Isabellas Mama. Sie lebt in den Vereinigten Staaten, ist aber hier registriert unter dem Namen "heartsong" - wer sie also kontaktieren möchte, schreibt "heartsong" eine Nachricht (bitte auf Englisch).


I am 47. Isabella was a surprise pregnancy and I also worried because I had some wine in late November and early December before I knew I was pregnant. This was preorganogenesis, but when anything goes wrong, you are so afraid that you did something to cause it.
There was a 95% chance of miscarriage in the first trimester because of my age and the chances of getting pregnant naturally at 47 are slim to none, so I certainly wasn't expecting to become pregnant.
My quad screen came back with a 1 in 4 chance of Downs Syndrome. I didn't think anything about it. They are not very accurate. The heartbeat was seen at 12 weeks and the baby appeared normal, but my home OB's sonogram has a very low resolution, which I didn't know at first.
At my 18 week visit with the perinatologist, they found a large cystic hygroma and an echogenic bowel. Her head circumference was measuring a few weeks behind as were her long bones. Her overall measurements were a week or so behind, He couldn't see her heart or face. He classified hygromas as and small, medium and large. It was 1/3 to 1/2 the size of the babies head and extended all the way down her back. The perinatologist said that the chances of survival were very low and offered me an abortion. He wanted to do an amniocentesis, but said that it wouldn't help the baby, so I declined.
He said that it was septated and that those almost never resolve, but that he had seen things he didn't think would get better get better. But he didn't want me to have false hope. I told him hope was not a bad thing.
I wanted anything I could hold on to. I prayed that God would spare her and prayed almost daily for some sign from Him that she would be OK. I never really felt that I could hear God clearly about her. But as time wore on and she was still with me, I began to feel that He might be saying, "Yes."
Evcry other week, I would listen to her heart, still beating and hope that the hygroma was going away. At around 22 weeks at the perinatologist, the hygroma was no worse and possibly better.The long bones and head circumference were again behind as were her overall measurements. He also said that he thought that the baby had trisomy 13 or 18. Those are fatal chromosomal abnormalities and I was devastated. I couldn't understand why GOd would give me a child to take her away.
As time wore on, I understood that she was eternal. That I would always have her even if she didn't survive to term or after. That she was fearfully and wonderfully made just like my other three children and that I would have her for an eternity even if not here. I prepared for Down's Syndrome, T-13, T-18, Turner's and the death of my baby.
As I read about Down's Syndrome children, more and more friends came to me and said those were the sweetest children ever born. I read story after story of how these children blessed their families. I read stories of mother's that lost their babies to T13 or T18 and heard how their babies blessed them. I read Rosie's story and Laura's story and felt hope that a hygroma could be overcome.
At 24 weeks, her echo of her heart appeared normal.
At 28 weeks, the hygroma was completely gone. I believe this was the visit where he said that one of her kidneys was polycystic and that the other was probably functioning, but that he couldn't guarantee what would happen with her kidneys.Her measurements were following the same pattern with and overall 33rd percentile. He again said that he thought the baby was T13 or T18.
At 32 weeks, her measurements fell to overall 15th percentile. He thought she had rocker bottom feet and again said that he thought she was T13 or 18. Her head and long bones had fallen even further behind normal.
She was delivered at 34 weeks due to preeclamsia. Two of the happiest moments in my life were when I heard her cry when she was born and when the perinatologist came in and told me that she appeared to have Turner's Syndrome. I cried tears of joy. I would get to keep her.
She is a beautiful baby and a joy to have. We all adore her and can't imagine life without her. She is so sweet to hold as she snuggles into you when she sleeps. She loves to be held, talked to and sung to. She expresses her wants clearly. She makes the sweetest sounds and squeaks when she is enjoying being fed and snuggled. She says Unh unh forcefully if you do something she doesn't like.Amd pf course screams her head off if you really upset her. We all exclaim over her all day and she never lacks for a willing set of arms.

Don't give up hope.The doctor's are often wrong. They don't know your babies future.
Hang on.
Sing to your baby.Read to your baby. I did. Do all the things you would like to do with your baby now. Enjoy your baby and your pregnancy as much as you can.
Don't let this steal your joy.I am sorry for the times I let the trial steal my joy. Enjoy this baby. You may have all you want and more. It can be better than you ever imagined.
And your baby is eternal, whether held here for a short time or for a lifetime.



Thank you for sharing your story


zuletzt bearbeitet 18.04.2011 10:09 | nach oben springen


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