1. Your name and some details about your twin or higher multiple baby(s) who died, and other children (if any, living or previous losses)… My name is Joni and my husband, Brian, and I have lost two children. On July 28, 1994, Elizabeth died at the age of 10 weeks due to SIDS. She left behind a twin brother, Christopher. Elizabeth was at daycare when she died, it was my 8th day back at work. I’ll never forget the phone call or the horror in the ER that day. Christopher was immediately placed on an apnea monitor and had to be monitored until the age of 13-1/2 months due to apnea spells. He was the only reason we got out of bed each morning, and I still feel that the first six months after she died were really a blur. My memories are very vague of what we did during those months, except take care of Christopher.
When Christopher was 19-1/2 months old, we welcomed Nicholas into our family. Our joy was short lived, when we found out at 1 day old that his brain didn’t develop correctly and that he would probably be severely to profoundly mentally retarded. I remember telling the pediatrician that that was fine, just as long as he lived. We really didn’t think we could handle losing another child. At the age of 5 weeks we took Nicholas to a specialist at the University of Minnesota, only to find out that it was all much worse than we imagined. He was diagnosed with Polymicrogyria, a brain development disorder in which the brain stops developing somewhere between the 4th and 5th months of gestation. We were told he would never walk or talk, 50% of these children die by the age of 7 years, 95% have seizures by the time they are one year old, and almost all have feeding issues that require a feeding tube. The chances of being born with Polymicrogyria are 1 in 100,000. The cause is thought to be one of three things: a hypoxic event in-utero where the oxygen is cut off to the brain; the mom is exposed to cytomegalovirus (CMV) for the first time; or genetic. They think Nicholas falls into the genetic reasoning, even though his chromosomes were normal. The defect is just too small to be seen by a normal chromosome test. Because we are SIDS parents and used to not having answers, we really didn’t pursue the entire issue. At times now I wish we would have. Nicholas lived to be 16 months old and died on May 12, 1997.
2. When I remember my baby(s), I… I have mixed reactions. Sometimes I have such happy feeling about the times we spent with them, and sometimes it makes me so sad I can’t hardly stand it. I see their smiles and hear their laughter and wish we could make time go backward.
3. The worst part is… waking up each morning thinking everything is okay, then realizing that it one away and I don’t know if it ever will. We have had so many bad things happen that it’s hard to believe that we can ever have anything good happen.
4. I have coped with anger by… I’m not sure I know how to answer this question. Sometimes I just want to be by myself and sit in our room and feel sorry for myself, other times I lose myself in a novel, other times I get so angry that I just want to scream. I talk a lot to a lot of good friends and family members who allow me to keep saying the same things over and over.
5. I still have problems with…dealing with twins and healthy babies in general. It’s not that I’m not happy for others, sometimes I just wish it could be us.
6. I have learned that… some people just can’t deal with the fact that we’ve lost two children. They don’t want to hear about it and they seem to think that we should just get over it. They truly don’t understand that you don’t just get over it. We are different people than before, yet they think we should be as carefree as if none of this ever happened. I’ve learned whom I can say things in front of and whom I have to put on a mask for.
7. I no longer think that… I’m not strong enough to handle tough situations. if someone would have told me that we were going to lose two children I would have said there is no way we can handle that. We have, and we’ve proven to ourselves that we’re both a lot stronger than we ever dreamed.
8. I remember when… life seemed so easy. Even when I was pregnant and I worried about things happening, I never dreamed that any of this would happen. I used to think that SIDS happened to a friend of a friend. Now those people are us.
9. My partner (if any) and I feel close when… I’m lucky, I have a truly wonderful husband who supports me no matter what. I think we always feel close, and I feel we have a bond that no one can break. He’s the only person who truly understands how I feel, and I can’t put into words the comfort I receive from that.
10. The best times to remember my baby(s) are… When we’re just sitting around talking about our kids with a group of others. It’s so easy to say “Elizabeth did this” or “Nicholas did that” and our true friends and family accept those statements as part of our lives.
11. The worst times to remember my baby(s) are…around the anniversary dates. Sometimes I wish those days would just go away, yet I want to be able to honor the memories.
12. Sometimes I wish… I could turn back time. I wish Christopher knew what it was like to have a twin and a little brother and I wish I knew what it was like to raise three children.
13. When I could handle it again, I did… I went through the boxes of Elizabeth’s things that we packed up right after she died. It took me 4-1/2 years to open them, and I couldn’t believe the memories that came flooding back. It was really hard to do, but I’m so glad we did. Now I can open them and not feel quite as overwhelmed.
14. If I could choose whether or not to have twins again (or triplets or more etc. again)… I would. The ten weeks that I had with Christopher & Elizabeth together were the best and I don’t regret anything, except that it all had to happen. I wouldn’t trade the time we had with them for anything. I tell everyone I know who is having multiples to forget about the time and money issues, just enjoy them. You never know what the future holds.