Dear Yvonne and BellyButton,
My case maybe different from you both, I just want to share with you my story, perhaps it will help you on your decision.
I had a miscarriage before I had my baby girl, Jie Yun. At my first detailed scan at 21 week, she was diagnosed with a very severe heart problem - Tetralogy of Fallot (TOF), which means she had a narrow blood vessel that connecting her heart and lung, a hole in heart, overriding of aorta and oversize of right venticle. The severity of her condition could only be revealed at birth. Since babies with TOF have high chance of chromosome disorder, my gynae wanted me to do amniocentesis to find out, so I did. My gynae asked us whether we wanted to abort her, if so, we had to decide quick because it would be 24wk when I got my amnio result.
The three weeks waiting was a long torture for both of us, we discussed and I couldnt stop crying. Somehow I had the feeling that the amnio result would turn out o.k. so I told my hubby that I wanted to keep our baby if the amnio result showed no chromosome defect, although I knew that it might drain us dry, both financially and mentally, I simply couldnt bear to give her up, she would be my first baby and I could feel her moving inside me. In fact, it was my decision to keep Jie Yun, even my hubby was still hesitating.
The second half of my pregnancy was not easy because while we hoped for the best, we couldnt avoid thinking about the worst. When people congratulated me, I didnt know how to tell them my feeling on the pregnancy. My mood swung most of the time and I always quarrel with my hubby for nothing, I knew it was really bad for our relationship but I couldnt control myself as I always do.
Jie Yun came to this world on 29 Dec last year. I had an emergency c-section after a prolong second stage labour. She was very blue when the nurse showed her to me; her crying was so weak that I could barely hear it. She was sent to NICU immediately. I was discharged on 1 January 2005, on my 32th birthday, without my baby in my arms. Jie Yun had to stay in the NICU because she had feeding difficulties and had to be tube-feeded, and the doctors wanted to monitor her condition for a longer period.
About two weeks later, Jie Yun was found to have fits (seizures) and the doctors did some blood tests, it was then they suspected that she might have a rare chromosome disorder called Di George Syndrome, caused by microdeletion of some genes in the chromosome 22 (C22q11). This was a big blow to me, as I was not prepared for this, I always thought that she only had heart problem, though it was a very severe heart disease with very poor prognosis. The pediatric specialist told me that most DGS babies couldnt survive to their first month because they have low immunity, which make them prone to infections. I felt like the world had collapsed in front of me, why me? And why the chromosome disorder wasnt pick up during the amnio (I was later told that DGS can only be picked up by FISH, and have to be specific FISH for C22q11)? What did we do to deserve this?? Countless questions which no one can give me an answer
Very soon I told myself to stop self-pity because my baby needed me, I had to be strong for her. Hubby came back to work and I stayed in Malaysia, traveling to hospital almost everyday. I was very tired and I felt that my body was weak, I caught a cold and I had wound broke down but I had no choice because I didnt know how much time I had to be with my baby.
On 31 January, Jie Yun suffered from breathing difficulty and she had to be put on life support. The doctor placed a tube through her vocal cord to supply oxygen to her lung. I couldnt hear her anymore, not even when she cried (my heart break every time when I think of this). She was o.k when she was with the ventilator until she got a fever on 27 February, a lung infection which eventually took her away from us, on 5 March.
I dont know whether my decision to keep her is right or wrong, or perhaps there is no right or wrong for this kind of situation. Watching your own flesh and blood dying in your arms is something that one should never experience, but I dont know I will be better of if I had given her up at the beginning. Its like stabbing on my heart every time when I saw my little Jie Yun being hooked up with all those tubes and wires, or being poked for taking blood samples and for medication. Tears burst when I think of all these, even now, when I am writing this letter.
Do I regret? Yes, I do. I regret because she had to suffer so much and I was the one who insisted to bring her to this world, and to suffer.
Do I regret? No, I dont. If I had given her up earlier, I wouldnt be able to see her, to smell her, to touch her and to love her. My memory for her is so vivid that I will never forget her, even though it means the pain will remain with me forever.
Some said we can always have another baby and some even suggested us to have it soon, but all I want to tell them is: My little Jie Yun cannot be replaced, she is the unique one and she will always be my daughter. It is not fair to treat my future child(ren) as a replacement of Jie Yun, too.
Yvonne and BellyButton, to keep it or to give up is all up to you really, no one can tell you what to do, neither do I. I am only here to give you one of the possible scenarios in the future.
Just hope this offer a little help.