On Thanksgiving, almost two years ago, my husband and I conceived through IVF. We were thrilled, especially when we were told on December 24th that we were going to have twins. I was unable to work from the very beginning and by 19 weeks my pregnancy was in trouble. I ended up at North Shore for premature labor and incompetent cervix. Since my babies were previable, after a week on hospitalization I was sent home on bed rest with medication, home monitoring and weekly sonograms. At 21 weeks the treatments were failing and I needed to return to North Shore where I would remain until I delivered. I will never forget the day when Dr. B. and Dr. H. came in to examine me. We were just 23 weeks along and our doctors wanted to see if I was beginning to dilate. Sure enough, I was. We now had to make the decision whether to continue with our pregnancy or to terminate. We struggled so hard to conceive and I felt these babies growing and moving in side of me, how could we terminate. I had already bonded with the babies; we just did not want to give up. My husband and I agonized over this, could we accept terminating the pregnancy and accept the not knowing, or what if we continue and we have a horrible outcome. We had made an informed decision to continue the pregnancy; I guess we thought we had already been through the worst. Our goal was 28 weeks, of course we would take more, but if I could just hold out another 5 weeks this would all be worth it. I had a big calendar hanging on my hospital wall and each morning at 6:00 a.m. the nurses on the Unit would come in and cross off another day. I would be thrilled that another night had passed and I was still pregnant, uncomfortable from the magnesium, but nevertheless, still pregnant. With the daily encouragement of our doctors, especially, Dr. B., Dr. F. and Dr. C. and our weekly visits with the social worker we were somehow able to get through this most difficult time. Dr. Sharon B. brought to us the knowledge by giving us a week-by-week update should are babies be born and what to expect. I honestly feel I could have not made it through this without all their wonderful support.
On June 1st, 1999 at 28 weeks and 4 days into my pregnancy my water broke and I went into labor and there was nothing that could be done to stop it. I delivered two girls, Baby A, Nikki, 2 lbs. 7oz. and Baby B, Dana, 2 1bs. 12 oz.. They went through all the usual preemie stuff, brain bleeds, apnea, respiratory distress, blood transfusions, reflux, and courses of antibiotics to rule out sepsis, several stomach and head sonograms and CAT scans. As anyone who has been through the NICU experience you know that it is one of the scariest times, seeing all those machine do all the work for your very small babies. The girls taking one step forward and then ten steps back. It was a whole month before we could even hold one of our babies.
After the second head sonogram that Dana had we were told that Dana had “Periventricular Leukomalacia”, which means our baby was deprived the oxygen she needed, at what point no one knows. My husband wasn’t with me that day when Dr. B. told me the horrible news with the social worker in that very small parent lounge. I remembering feeling like the walls were closing in on me. I don’t remember how I drove home that day on the Long Island Expressway. I went home that night and I think the first thing I did was read everything I could on the Internet on PVL. What I was really looking at was a child with Cerebral Palsy. We were devastated, all our hopes and dreams of having our perfect twin girls was over. The question now was, how bad would she be affected. Our family was very positive and kept telling us with therapies they were sure Dana would be just fine, of course that’s what we all wanted to believe. All the doctors involved could tell us was that we would just have to wait and see. The only thing we could do now was just concentrate on getting our babies home. At just about two months later, our girls came home a week apart. Both of them were tiny and we just focused on caring for them. Although things were very hectic we were overjoyed. We thought we would have time to enjoy both the girls before we would see any signs of Dana’s brain injury but Dana had several issues from the day she came home which seemed to get progressively worse as months went by. We started early intervention for both girls in October, and through all of this, our other baby Nikki began to develop and progress beautifully.
In early February, Dana at 8 months old began seizing. I took her back to the neurologist for the second time. We did an EEG and it was confirmed that Dana was suffering from a horrible debilitating seizure disorder otherwise known as Infantile Spasms. I now know what Dr. T. meant when she said that there was a “poor prognosis” with children who developed IS. Although, I still never knew she could die. We had to get her medications through Canada and also added another medication to the mix to help calm her in addition to the reflux meds she was on. None of which seemed to be helping, she hadn’t really been able to reach any of the milestone for a typical newborn and we had several people coming into our home several times a week for physical, occupational, speech and vision therapy. I also brought Dana once a week to cranial-sacral therapy.
I can’t even begin to tell you what all this was doing to us as a family, physically, emotionally and financially. Between searching for someone to help her, holding her 24 hours a day, and not sleeping we were all just tapped out. It didn’t matter though, my husband and I were determined to do everything we could to make her comfortable and give her a good life. Our baby was beautiful in so many ways and when she did smile she just melted us and for that second, we thought just maybe, that she would be ok. When she got little purple Mickey Mouse glasses just 10 days before she died we joked about how she looked like a little genius.
On May 23 we brought Dana into North Shore for high fevers and difficulty breathing. At first the doctors thought it was pneumonia, however, the x-rays were clear. Then possibly a virus, whatever it was, it was attacking her upper airways and she continued to have difficulty breathing. On May 25 as Dana took a turn for the worse, my husband and I were asked if we would allow the doctors to intubate if they needed to. Of course our first reaction was we would do anything we could to keep our baby with us. Once again, in one year I am being asked to make a decision no person should have to make. Do we sign a DNR or do we take desperate measures to keep our baby with us, even if it means lessening the quality of life that she already doesn’t have? So with the support of all our wonderful doctors involved with Dana’s care we agreed to sign a DNR. I am told that is the most unselfish act anyone can do. So, on May 28 at 10:00 in the morning our beautiful baby Dana passed away as we held her and told her it was ok. She was going to a place where there would be no more suffering…We buried her the day before she and her twin sister were to turn 1.
I think the first feelings we felt were of relief that Dana was not suffering any more. She was always so uncomfortable. It was unbearable for her and for us. After the feelings of relief which seemed to leave us rather quickly, I was left with such feelings of guilt for complaining about the rough times we were having and for complaining about it being so exhausting taking care of a “special needs” child. I kept thinking was there something else we could have done for her, something different? How could it be that we kept her well for the whole first year and her first illness ends up taking her life? But I do now know that there was nothing more we could do for Dana… Her brain just couldn’t fight the infection and maybe it was her way of telling us she needed to go. Maybe she was too tired to fight.
Dana was such a tremendous part of our being and she left a tremendous void in our lives. We wonder if Nikki remembers anything at all about her twin sister. But we know that as she grows she will know that she was a twin. We try to figure out why we had Dana for just under a year, but I know there are no answers for this right now. Why wasn’t she taken from us at birth or shortly thereafter? Maybe one day it will come to us or we may never know. But I know for myself, my husband and my oldest daughter Alexa we were glad to have had the time with her even though it was all too brief. We do everything we can to keep her memory alive, by keeping her pictures all around the house, keeping her things were I can see them and always talking about her and encouraging other people to talk about her as well. For me, talking about Dana is the healing process. I try to visit the cemetery daily, even though I know only her body is there, for me it is comforting just to be at her final resting place so I can speak to her and feel like I am near her. While it is now just 5 months since our little angel passed away we know she is with us every day in spirit and through her twin sister Nikki. Although some people say we are lucky that we at least have the other it does not take the fact that we lost our beautiful baby, or at the chance of raising our twins. Every time our Nikki reaches a milestone it becomes very “bittersweet” for us. We think about what we should have, two little girls who are just beginning to walk and to play with one another. What I can say is though, while we will forever miss her, in a sense it gives us relief and solace to know that she is in a better place where there is no pain and suffering. Dana has her little wings where she can watch over the rest of her family. We had this saying printed on the prayer card we had at Dana’s funeral and I read this daily because I find it somehow gives me strength…
God on his throne in heaven
Looked round at his flowers so fair
And then sought a blossom on earth
To add to those he had there
To be part of such heavenly company The bloom must be pure and sweet
And the little bud that was chosen
Was the child who played at our feet.
Sorrow is great at the loss of our child
At the parting with one we love
But the parting was made that our child might go
To brighten the heavens above.