From the moment she came to us she was special. She was born at 27 weeks with her eyes open. Sophia Rose was calm and curious and followed her sister Kaitlyn into this world. It was a feat for her to be here. She made it through Twin-Twin-Transfusion-Syndrome as the donor twin. Sophia was one pound three ounces when she was born.

When I saw them both for the first time I was instantly in love. Melissa and I dreamt of all the things you dream of when you are blessed with identical twin girls. The tea parties, the dress up games, all the special moments that make life special. Kaitlyn's road was not as hard as Sophia's and she came home from Virtua Hospital around Thanksgiving.

About the same time Kaitlyn was coming home, Sophia became really sick with what they called "NEC", when parts of the intestine starts to die. The doctors felt surgery was the answer, but it would have to wait till the next day. Walking around the NICU, I left Melissa's side to think. It was then that I broke down in fear that I would lose my beloved. The doctors had told me there was a danger of transporting her, but I knew she needed to go to CHOP.

Sophia went to CHOP that night and we were told she needed surgery. It was the hardest couple hours of our lives waiting to know the outcome of the surgery. When the surgeon came out, she gave us hope of Sophia recovering. It was a scary few weeks as she recovered. She had blown up like a balloon and was very sick. Day by day she recovered and was heading in the right direction. The doctors slowly started introducing feeds again to get her intestines working. She was given an osteomy bag to give her intestines a break. Sophia was able to almost completely be wheened off of oxygen too.

Feeds went well for awhile and Sophia finally started to grow. She was not able to get up to her full feeds and it was felt it was time for another surgery to remove the osteomy bag. We were excited to get her reattached, but the surgery set her back again. We never realized how hard it would be again watching her recover, especially since she was older and doing so many wonderful things, such as smiling, reaching, and seeking our attention. For awhile, we had to go without holding her so she could recover. After several weeks, she was able to restart feeds. She did well tolerating her feeds, but suddenly she started to have serious brady spells and she required CPR. The doctors felt she was aspirating and she was give an ND tube, in which her feeds would go directly to her intestines, instead of her stomach.

Due to the brady spells, Sophia started to regress. She required more and more oxygen and it was thought best to put her on the vent. You can't even imagine how hard it was to watch a seven month old have a vent down her throat. Sophia hated it! THe doctors felt it was best, because it was give her a rest and help her put on weight. We did see improvements, and the doctors were feeling optomistic that she could be home in two more months.

As time went on, she continued to brady and had several "code blues". No one at first could make sense of it, since she was on the vent. The doctor became concerned about what he called "pulmonary hypertension" and set up an ultrasound on the heart the next day. We prayed and prayed that she did not have pulmonary hypertenion because we knew that would be another difficult road to travel. THe next day, it was confirmed she had pulmonary hypertension and presented several different scenarios...and of course we prayed for the best. We went home that night to got a phone call several hours later telling us to come quickly to the hosptial, Sophia was not in good shape and they could not get her heart rate up. We rushed out the door in panic. On the car ride to the hospital we got a call, we got her heart working again. The sigh of relief went through our bodies.

That night, we sat with Sophia. We refused to leave her side. She struggled the whole night keeping her stats up. We kissed her non-stop, which appeared to keep her stats up. We were able to sleep a couple of hours by her bed until the doctor came in. We thought we would get some encouraging advice to what we could do next to save our daughter. We watched his face intently and our hearts sunk in. We realized there was nothing we could do, but say our goodbyes.

We were put in a private room where we were able to hug and kiss her and told her a zillion times how much we loved her and how sorry we were that we could not do more. We gave her a bath and dressed her. We then had to do the hardest thing ever, tell the doctor to remove the vent. We sat with our daughter in our arms, as she left this earth.

How much is too much? Should we have let the doctors continue to revive her over and over again? Melissa has been tearing herselfr appart thinking about it. I know in my heart we did the right thing. Our beloved Sophia had been through enough and bringing her back would only put off the innevitable.

There is no greater pain in the world than losing your baby. We got to know her and her special personality. We were there through the smiles, the feeds, the pokes from needles. All the hours of holding and kissing her. What does it all mean? Why did G-d take away our Sophia? Why did he let us know her only to take her? Why did he make her suffer for seven and a half months only to take her?

Melissa and I see her every moment we look at Kaitlyn. The grief is uncontrollable at times. Living is a chore, but when we look at our Kaitlyn, we keep going. Our love for Sophia will never die. We will keep her memory alive and well as we struggle with this.

Melissa and Dave - I am so, so sorry that you lost your precious daughter, Sophia Rose. My heart breaks for you. She has a beautiful name. What a special girl. I love your description of her, 'calm and curious'. It seems appropriate that she should have been born with her eyes open, even at such an early stage. Am I right in thinking that the name Sophia means 'wisdom'?

Your family has gone through so much. I really cannot imagine how hard it must be to see your seven month old daughter go back on a vent. It is incomprehensible that she fought so bravely for such a long time but is not here with your family. It is incomprehensible that your Sophia who was so beloved and so cherished should die.

I am a mom of a single twin myself. A relatively new mom, my daughter is only eight months old. It is difficult to contend with such mixed emotions. I only wish I knew the answers to your questions. I ask them myself. I am sure you will see Sophia when you look at Kaitlyn. It is hard not to think of the child that you have lost when you see her twin growing and thriving. It is hard not to imagine and to wish that things could be different.

Again, I am so truly sorry for the loss of your beautiful Sophia. I hope and pray for peace for you both and for Kaitlyn.

When my mother and I sat in the room with the doctor and found out what was wrong with Aeryn, we both understood immediately what was going on medically, and I knew that providing aggressive intervention was not something we could go for. We were told without it she would live perhaps fifteen minutes, and she lived for an hour and a half, held by someone the whole time. Afterwards I still wondered if we should have tried something, knowing intellectually that with her condition there was nothing that would actually have helped, but emotionally, I couldn't help wishing for just that much longer.

You are going to question your decision. One thing that will keep popping up is guilt - "If I had just..." - but honestly, try not to give in to that. You did everything you could, and it is one thing to do the painful, intrusive things that might help and another thing to continue treatments when they are not helping - but finding that line between the two? The ethics are a fascinating argument in the abstract but a horrendous tearing pain when you face the reality. I am so sorry for your loss, and I wish I could give you some kind of answer, but the fact is none of us really have answers and may never have them. Your daughter was loved and held, and died knowing that she was loved. Try to hang on to that as you go through, and I hope coming here helps somehow. I know it's helped me immensely, reading other families.

I struggle with this idea often. We said goodbye to our daughter nearly a year ago. The doctors told us her condtion was deteriorating and she wasn't going to survive. We opted to take her to palliative care, a place where we could live with her in those final days. We had five days with her, during which she was held and loved and sung to. When she died it was the most beautiful and painful moment of my life. But it was also a relief because her pain was over and she wasn't suffering any more. Our pain would continue, and still does but the relief that it is over is still there.

I question it all the time. I know what my gut tells me. My gut tells me we did the right thing. But now and then I play the 'what if' game and it tears me up. What if we'd forced the doctors to keep pushing our daughter to live? What if we'd fought and fought and fought? She might have lived another week, another month... with a miracle another year. And sometimes I want that. I want that time with her. I want her at all costs. But I know the moment I looked into her eyes and saw her pain and her struggle that I would take that wish back.

I think about what we had, rather than the what ifs. I think about how fortunate we were to be there and hold her during that time. How fortunate that she didn't die with needles and ventilation... I think about the term 'aggressive life saving measures' and how horrific they were to watch. I didn't want that for her. Her death was inevitable. We may have been able to push it back a bit, but the cost, for us, was too high. My little girl's last days with us were beautiful and peaceful. When I am rational and listening to my heart, I would not change this for the world.

Melissa and Dave, give yourselves time. It will always hurt, but your feelings will clarify a little as time passes.

Melissa, and Dave - I also gave birth to twins after TTTS at 27 weeks, boys. Ben (the donor twin) turns two in a couple of days and Liam lived for just six weeks... he had heart surgery and brain surgery, but eventually succumbed to hydrocephalus and a collapsed lung. We also had to remove him from the vent. That was the longest twelve hours of my life.

That all sounds so clinical, doesn't it? It feels to me in one way that LIam is frozen at 6 weeks old, four pounds. Yet at the same time he is a shadow of Ben, since they were identical - I can see him as he should have been. It's a comfort, it's a sadness.

I met another family that lost a twin daughter to TTTS - born at 25 weeks. They came over yesterday with their older daughter and little Alyssa, who is almost a year old now - and although we don't talk about it explicitly (it was for Ben's birthday party and it was nuts) it's a strange and wonderful thing to be with them. So much shared, so much understood. And so I just wanted to pipe up and wave, and welcome you here, and say I'm glad you both found us.

And of course, I'm sorry that damned sniper got you too. As to the revivals and resuscitations... you only do what your heart tells you to do at the time. And the doctors do the same. I feel the same way and so by telling you to let that go, I'm hoping to convince myself.

Love to you all, smiles for Kaitlyn and a big hug for Sophia. Thanks so much for sharing your story.

You and the family are in my prayers, David and Melissa. This is life's hardest journey to travel. What you have written is a beautiful tribute to your Sophia. Nancy

I lost a twin too. Not to TTTS but to a congenital heart defect. It hurts more than anything in the world. When my son died, I wanted to crawl into bed and never come out again but I had this beautiful little newborn girl I had to look out for so it wasn't an option. Professional grief counselors call our grief "complicated" because while we are grieving the loss of one baby, we must pull ourselves together enough to care for the other. My heart goes out to the two of you. Thanks for sharing your story, you painted a vivid picture of your love for Sophia. Hugs to you and Kaitlyn.