CLIMB

Dylan & Cody


I never thought in my lifetime that I would ever be writing about a loss of a child, let alone my own child. And here I am talking of my own pain and loss. Finally after almost four months I am able to write.

For starters, I am 31 years old, married to a wonderful man, and have three sons: Dustin 11 years, Cody who will be 4 months old February 25, and Dylan, his older twin brother, who passed away at one day old. I have had an ectopic pregnancy that went to 8 weeks, and we had been trying to get pregnant for around ten years. We also are from a small town that didn’t speak of such a thing as being infertile. So, of course I really felt like something was terribly wrong with me. Finally we were told that my one fallopian tube was blocked and that probably the only way to conceive would be in-vitro fertilization. It took another long year to decide what to do. Of course with no insurance coverage and the cost being so high we just weren’t sure how we were going to do it. So finally we came to the conclusion that we would refinance our home and give it one try.

After being referred to a wonderful doctor in the cities, we finally got things started in late November, 1998 after having my blocked tube removed under the concern of this doctor to help the odds better. In January we began injection classes, meetings, and that was just the start. Then came shots, ultrasounds, blood work, and many trips to the doctors. When they finally retrieved my eggs they had 13, but only 11 were good, so here we were 11 embryos and the day of the transfer the doctor wanted to put back 3 because of the odds and also because he knew we would only be trying this once. What a decision. We decided to only go with two. My husband said he knew this was it, and we would be having two little ones. I of course still wasn’t sure any of this would work. After all these years I had lost most of my hope to have another baby. Then there was that long two weeks of waiting for that first pregnancy test. Positive. I was still shocked; even at the second pregnancy test I still was shocked. So I was a pretty worried mother-to-be. I kept thinking something was wrong and I

would lose my baby. Then came the first OB ultrasound. I remember asking my husband, “Well, how many do you think?” Two, he said. I still felt only one baby. Two little heartbeats are what we saw, I felt I was finally blessed, and twice. How could I be so lucky?

After having early contractions at 4 months, and pregnancy carpal tunnel, and other minor problems, I just felt something was wrong. My OB doctor kept reassuring me that it was nothing, that it was just a different pregnancy because of twins. At thirty weeks I was admitted for preterm labor. They were able to stop things and after a few days I was sent home to bed rest. And only two days later at thirty-one weeks my water broke. So back to the hospital. I was so scared, I just wanted my boys (at 19 weeks we found out) to be healthy. Because I wasn’t very far along, they sent me to a large hospital in Minneapolis. They just weren’t equipped for this early of a pregnancy and with twins.

So, that is when the doctor was doing the ultrasound, and we could feel something was wrong. The doctor was great, he said he wanted to be honest and wanted to explain what his concerns were that he was seeing. That is when he told us our heartbreaking news. That baby #1 Dylan had only short-limbed bones. The doctor was not going to try to hide anything and told us he thought it was Thanatophoric Dysplasia, and that the longest known survival was 169 days. And being Dylan was head down, and on his way out he gave us the option of going vaginal birth or c-section. With also commenting that he wanted to at least be able to send home one healthy baby with us. So right away I was saying, “Let’s do the c-section”.

Not too terribly much longer I was hearing cries, from both of my babies. I thought to myself, maybe the doctor was wrong, and Dylan and Cody will be going home with us. Not just Cody. That next day is when our family and pastor came and we had a prayer service. We all held Dylan, took pictures, videos, and just enjoyed our small time with him. Only to say goodbye that afternoon. I never in my life had felt so empty or numb. I just wasn’t sure what to do. That following weekend we buried our darling Dylan. I feel at times I am grieving better, then there are those days when I just feel angry, alone, and confused. Not knowing why this happened to our family is hard. I know we will never have an answer, but I still ask God why.

Cody was released to come home November 18th. I kept saying he would be home before November 28th which was my birthday. But everyone kept saying “you’re pushing it, don’t get your hopes up”. I said I knew my baby was a fighter, both of them. Otherwise Dylan would not have hung on as long as he did.

We were just to grateful through this all that we had doctors, nurses, counselors, etc. who were just really there for us. Whether it was to talk, or let us cry on their shoulders, or anything, they just helped so much. It was our counselor who had given me your newsletter, thank God.

Through all of this that we have experienced, we learned a lot. My regular OB doctor did not even call to give her concerns until the day I was released from the hospital. Which made more anger come out. After we were told that they should have detected Dylan’s condition as early as 17 weeks we wondered why didn’t anyone notice, when here in less than an hour the doctor from the Cities knew something was wrong. It wasn’t like we didn’t have any ultrasounds. We know that there would not have been anything that they could have done, but we could have been prepared that one of our sons would only be going home with us, and the other to heaven. Especially when everyone kept saying that both the babies were healthy and there were no problems. We were expecting two healthy boys.

The counselor had given my a copy of CLIMB newsletter, and now I don’t feel that I am the only one to experience the loss of a twin.

Barb

Interview…

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). . . Barb and Don . We have two living boys. Dustin, 14 years, and Cody 3 years (Dylan’s twin). We lost Dylan from Thanatophoric Dysplasia (fatal type of dwarfism). The boys were born October 25, 1998. Dylan died the next day at 1:45 p.m. We also had a tubal pregnancy April, 1989. After many years of infertility we finally decided to try in-vitro (only once because of the cost as some of you may know) and that is how our twins were conceived.

2. When I remember my baby/s, I . . . always think of the “what ifs” and how much I miss him. Sometimes feeling that it’s just a bad dream that I can’t wake up from.

3. The worst part is . . . people not remembering Dylan, like he was never here. And like other moms just feeling our time together was too short.

4. I have coped with anger by . . . putting that anger into loving my boys more. Some counseling, but definitely not enough.

5. I still have problems with. . . having to make the decision to discard my last 9 embryos, knowing that was the end of ever having any more children. Feeling that in a way I was losing 9 more of my babies. Especially as I was still grieving for Dylan.

6. I have learned that . . . losing a child is the hardest think in life that I will ever experience in my lifetime.

7. I no longer think that . . . all people will understand if you’re open and honest with them. Some people will just never get it.

8. I remember when . . . I felt the boys move and thinking that we would have two healthy boys, and how lucky I was after all the years of infertility to get two.

9. My partner (if any) and I feel close when . . . Our life is so different now. Sometimes I don’t think we will ever be as close as we once were. I try to respect our differences in how we grieve. And I think that is part of it.

10. The best times to remember my baby/s are . . . mostly any time, but when Cody comes up to me with his beautiful blues, and looks into my eyes and says “mommy, I love you.” I think of Dylan being right there also saying it.

11. The worst times to remember my baby/s are . . . the boys’ birthday. Knowing they will never share that special time.

12. Sometimes I wish . . . like so many other moms that I could have just had more time, or that it never happened. Maybe even to have really looked at Dylan more, so I’d never forget anything about him.

13. When I could handle it again, I did . . . dealt with certain issues pertaining to losing Dylan. Like typing a letter to my doctor and telling her how I felt. Telling some family members how they hurt my family.

14. If I could choose whether or not to have twins again (or triplets or more etc. again) . . . Yes, most definitely. I always hoped for a big family. But I do know I would have been so scared, I was a very nervous mom during my pregnancy with the boys as it was. After having a tubal, all the years of infertility, and all that we had went through just to conceive were enough.

Barb