Maddy's Birth and Death

by Lisa Paulos Shea

Date: Fri, 26 Feb 1999

When I became sick earlier this month Kevin had just flown to Chicago for a meeting, We had another 8 weeks until I was due (we thought) and when he asked if he should call off his trip I told him not to; I thought I was getting a migraine. When I saw my midwife Donna later that day I had a non-stress test, and Maddy looked fine, but my blood pressure had really shot up. I'd been on bed-rest for over a week already (I'd had pregnancy induced hypertension since mid-August that had responded well to medication until December) but my blood pressure was higher than when I'd taken leave from work. The MD Donna works with wanted me to go to the hospital for a 24-hour urine test - he wanted an hourly protein screen to make sure my kidneys weren't shutting down. With Kevin out of town I didn't want the kids to be left alone overnight, so I asked if it could wait until tomorrow. Dr. Girardi said no, which should have clued me into their worry. At that point I didn't think it was too bad (it wasn't yet), so I went to the hospital, called Kevin, who booked a 5 am flight home from Chicago.

I was given a magnesium drip, which prevents seizures. My blood pressure was too high and never came down, and they were worried about pre-eclampsia. By 4 am my veins were inaccessible. I'd swollen so much and my blood pressure was so high every time they'd find a vein it blew when they stuck me. My BP wasn't falling and my headache didn't respond to pain medication - they knew I was pre-eclampsic so they decided to induce labor.

Madeline was 32 weeks - a good gestational age to take her early. I guess I was pretty ill - I didn't fully understand at the time (mag sulfate is disgusting, it makes you foggy and stupid), and they put in a central line IV to draw blood and give me medication. Without Donna there to explain my options I think I would have been truly overwhelmed. Once I was pre-eclampsic I ceased being a midwife patient, but she was with me at the hospital the whole time. I had every invasive procedure I'd wanted to avoid visited upon me. But since Donna was there running whatever interference she could, I never felt like we hadn't tried everything else first. The MDs in the practice did everything they could to help me deliver naturally given our limitations. I was catheterized because of the mag drip, had this central line coming out of my neck, couldn't move from my bed, but still they helped me labor from the time the Pitocin started to drip at 7 am until after midnight. I was so lucky to have the midwives and doctors from this practice - they worked so hard to have me go vaginal.

Kevin got in at 10am (we had a huge ice storm and he was 3 hours getting from the airport to the hospital) and we were on our way. Labor wasn't that hard - my head hurt so much that the contractions, even when they were 2 minutes apart and off the monitor, were easily manageable. Kevin and my mom (who drove down from South Bend at warp speed) were there with ice chips (I couldn't drink liquid like a normal midwife patient. I had developed HELLP syndrome, part of which meant my blood wasn't clotting, so I couldn't have an epidural and would need general anesthesia if I needed a c-section, so nothing in the belly). In the end I had internal monitoring (I'd been in labor 17 hours) and whenever they'd increase the pitocin enough to get progress on dilating me, Madeline's oxygen level and heart rate would decrease. After 2 hours of walking that tightrope and my blood pressure increasing, we all decided I'd have to have the c-section.

I hated the general anesthetic. In retrospect the one thing I truly regret is being knocked out when she was born. At least I could have had that time with her. Kevin was with her when they brought her out - she scored high on the apgars (7 and 9) and everyone was amazed at how feisty she was for all the meds I'd had. I woke up an hour later and Kevin told me she was perfect - he'd been with her up until I'd woken up, she was in the neo-natal ICU but she was 4 pounds and 17 inches long (with two really short people for parents!). I tried to focus (the mag again) on the pictures of Madeline - I knew I couldn't go to the NICU until I was off the mag and could walk. They told us to grab some sleep, and my mom went home at about 5 am to tell the kids they had a sister.

The NICU doctor woke us up at 7 to tell us she'd had a "rough night" and seemed to have an infection. They'd had to put her on a respirator and wanted to transfer her to Children's Hospital just in case she deteriorated. They said they'd bring her into me before she left so I could see and hold her. It was almost 2 hours later when Madeline's doctor came back - they'd been working all that time just to stabilize her. They didn't want to risk bringing her into us then, we all said yes, just get her to Children's. The doctor told Kevin he could meet them there at 10am.

Kevin was worried about me - my pre-eclampsia was at its worst (the symptoms of your kidneys shutting down and your liver failing are at their worst once the danger is starting to pass) - but we knew he needed to be with our daughter. He kissed me and told me not to worry. We asked the NICU doctors if she was going to die, and they said they didn't know. We were shocked. I remember thinking how unreal this was - she was so vital and healthy such a short time ago. Dr. Hansen said she thought it could go either way, that they weren't having as much success as they'd like to controlling her BP and breathing because of the infection. Kevin held me and told me not to worry. In two weeks, he said, we'd both be sitting by her bedside holding her hand and watching her get well. He told me he loved me. He and my mom left for Children's.

The worst feeling I'd ever had (up to that point) was watching him go without me. As I hugged my mom goodbye I remember asking her to take care of Kevin - I asked her to go with him so he wasn't alone, and because if she died I didn't want him to have to be the one who called. She told me later that that was her low point. In my worry over my daughter, I didn't think about her worry over hers. My mom said her hardest thing was leaving me when I was so sick. After Kevin and my mom left I tried to sleep. Off and on I'd drift in and out - every time I woke up I'd say out loud "Please hold on, Maddy, please don't die" like it was some magic phrase, some mantra that would keep her alive.

At noon Kevin called - she was stable but they had used every medical trick they could. If something else went wrong, there was nothing they could do. He and my mom stayed with her, held her hand and loved her. When he hadn't called by 2, I knew in my heart she was dying. At 2 she started to fade again. Dr. Hansen asked Kevin if he wanted them to crack her tiny chest to try heart massage, or if they should let her go. I can't tell you my immense sorrow and guilt that he had to make that decision alone. My mom tells me he approached it straight on - would it save her or just buy her time? Dr. Hansen said it would just prolong the ordeal for her. Kevin told me later it was the worst thing he'd ever had to do. I told him I wished we could have shared that burden, but he said we did. He said he knows me and he knows "us" and he knew what we should do. He told them to let her go, and he sat down to watch our daughter die. My mom held him when he fell apart and he asked the Drs. to take her back to St. Ann's so I could hold her before she died.

They put her in the ambulance with Kevin and my mom drove ahead. Dr. Hansen arrived first. She walked in and before she could speak I asked her "Is she dead?" She said not yet, but she didn't think she'd make it back. She told me Kevin wanted her to die with us both - I remember panicking that she was alone in the ambulance and Dr. Hansen assuring me that Kevin was with her. Donna and my mom came next - my mom cried and told me she had died in the ambulance. My whole world pulled away from me - it was like passing out: sound diminished, the room went lighter and lighter until it was almost white, I felt like I'd just cease to exist until I remembered Kevin and BAM I was back in my own skin. I think I understand love now, or what it is to love.

When all else failed me and I failed myself I knew how to reach back out - the thought of Kevin and I living through this together pulled be back. I remember telling my mom I was afraid this would ruin us like it's ruined so many other couples. I was so afraid, right at that moment, of losing him, too. My mom held me and told me that that had been his greatest fear, too. He'd told her he was worried that losing Madeline would make me shut everything else out and he'd lose me, too. The only thing that mattered to me at that minute was holding him, and every time the door opened I'd struggle to sit up and my mom wold say "it's just Donna" or "it's just the nurse". It seemed like forever until he got there. I remember when he came in how quickly he was walking; he walked straight to me and said "I'm so sorry" and "She's died". And then he was on me, he kneeled and laid across my chest and we cried together and I told him it was ok. After a long time we stopped crying and he sat back and said "She fought so hard" and I told him "I'm so glad we tried" and "I'm not sorry we made her" and he nodded yes, making this life was a good thing.

Donna brought me my daughter. She was still warm and she'd been dressed, and when Donna handed her to me I wasn't sad any longer. She was so beautiful. She had dark, curly hair, a little pug nose. She had my big eyes and when I looked at her mouth it was just like seeing Kevin. Her top lip was a perfect bow and her bottom one the same thin, straight line I've kissed goodnight every night for 4 years. She had his pointy, dimpled chin. Sometimes when he's asleep, I look at Kevin's face and I can see her, still. She was so perfect. I miss her so much.

I unfolded her tiny hands and felt her little fingers. I felt it all wash over me. "You're real," I said, over and over again, and then I cried, and my mom said "Yes, baby, she's real and she's your daughter" and I cried harder because my mom understood. It was going to be the only time I held her, and after all those months of her moving inside me it was (is) so hard to believe it's all over, and this was the only time I'd have to parent her. It wasn't enough.

I handed Madeline to Donna when we'd said goodbye. She held her so softly for a minute I thought she was alive. It was the first of many tricks my mind would play on me. I still dream that she's alive. I hate waking up because I find out all over again that she's dead. I remember thinking when I handed her to Donna how intrinsically wrong this was, that she was my midwife and she should have been handing a brand new life to us, and here we were asking her to take one out for us.

My mom went to get our kids (Kevin's from a previous marriage, a son 17 and a daughter 11 who live with us and were so looking forward to this new child), who were just getting home from school and didn't know what had happened. Keri wanted to see Madeline. Kevin told my mom no, that he didn't want the kids to see her dead, but Donna asked him to reconsider. She said that Madeline was still warm (she'd had her put in a warming bed) and still beautiful, and that the kids needed the same kind of reality check of seeing her that I did. She was very kind. She just asked him to be open to the possibility, and when my mom got there with the kids, he talked to them and they seemed ok, and Donna brought Madeline to them. Our daughter held her and brought her over to me, and between us she was so small and soft, and we cried and I showed her her sister's hair and lips, and she laid on the bed with me, and our son held Madeline. Kevin stood with him and even he cried, and Kevin said to him "now you know why we care so much about what you do and how you grow" and this almost grown child nodded yes, now he knew.

I was in the hospital for a week. Kevin never left. He slept in a folding chair and held my hand and watched me sleep. On the fourth day he fed me little pieces of bagel and the nurses went to the other floors to steal me Cranberry juice when I went through their supply. Every morning he spoon-fed me egg and toast until I could hold my own fork. My mom stayed with the kids and my Dad and brother came down to help. Kevin didn't want to leave me, so my mom made all the calls and arranged for the cremation. Later, when I was having nightmares of regret for having agreed to an autopsy, my mom told me how she went to buy something to have Maddy cremated in - she didn't want to use anything she'd worn so I could keep those, and all we had was too big. She said she bought a white preemie outfit with an "I love Daddy" patch on the sleeve, and when she took it to the funeral home they offered to put it on Madeline for her. My mom said no, and dressed her for me, for Kevin, because we couldn't. She told me she looked fine, and they had covered her scars. My mom held her for almost an hour after she dressed her. I wish so much that could have been me. Now I see her in that dress instead of having nightmares about the autopsy. I'm so grateful to my mom.

And to the nurses - so many of them went so far above and beyond just nursing. They brought blankets for Kevin and made sure he ate. They brought me chapstick and cold rags and found extra water pitchers for me. On Saturday, one of them offered me a sponge batch, but I declined because they baby powder they used reminded me so much of her, it hurt too much. She went to her locker and brought back her raspberry shower gel and lotion, and for an hour she washed me. I cried the whole time - it was like being a big baby myself and I hated being touched and washed. I should have been loving my daughter like that and I felt so guilty taking kindness from anyone. I shouldn't feel better when she never could. The nurse just let me cry and when she was finished I felt so much better. I've been so lucky - blessed - touched by the compassion of people who didn't even know me. It will be truly difficult to maintain that air of cynicism I've affected all these years. I have such a new found respect for the capacity of my fellow man.

I'm at home now, getting a little stronger every day. Kevin and I sent out emails and letters to everyone who wanted to send flowers, etc. We've set up a fund at St. Ann's NICU in Madeline's name - they'll use it to buy preemie gel pillows to prevent flat spots on the infants' heads and books on loss and grieving for parents in our situation. It gives us something positive to focus on; there's so much love we had to give her, we need someplace to put all this love. So we give it to each other. Every night since I've been home we've laid in bed together before we fall asleep. One of the worst things (for us both) in the hospital were the nights. I laid alone and he couldn't hold me. The first night we could lay together was literally the best feeling I'd ever had. Sometimes we talk, sometimes I just cry. Again, how lucky am I?

It's a month today since she was born and died. I would have been bringing her home this weekend. I miss her so much. They say the minute you see your child your whole life changes, and now I understand what that means. It isn't what I thought, though, that it changes because of the bustle and hurry of another person in the house, someone completely dependent on you for everything.

When I looked at her she became real. She wasn't just our daughter, she was Madeline. She was a unique, perfect human being. She looked nothing like I thought she would, and was everything I'd hoped. My life expanded limitlessly when I looked at her face. Our children are potential personified. Though I never saw her alive I saw her whole life, I saw everything she would be. That's what changes your life. That's what you fall in love with and that's what I grieve the loss of.