Maggie's Story

Maggie's Story

The Miracle of Maggie

Alessandra

Every time I sit down to write the story of our past several months, I find it so hard to articulate the enormous way in which we have been changed. It feels almost impossible to explain how a desperately sick, 4 ½ lb little girl could have such an extraordinary impact on us – and those who know us. But, Maggie was special – and we will forever be privileged and humbled to call her ours. Here is the story of the bittersweet journey we shared with our remarkable little girl – and, be sure, the moments of sweet were every bit as plentiful and powerful as the moments of bitter.

It took me four years to convince my husband, Clayton, that we needed another baby. I had always planned for a family of five – three children just seemed right to me..and, besides, I had this nagging feeling that one of us was somehow “missing.” Truth be told, I had, actually, wanted to adopt… I hate being pregnant and didn’t have easy pregnancies in the best of circumstances (6 months of bedrest while waiting for Charlie, our youngest son!). Still, though, I was so elated that May evening when he agreed (finally!) that another child would be a good idea, I didn’t even try to convince him to go the adoption route. Harry was seven, Charlie was five – the timing felt perfect and I couldn’t wait.

We got pregnant right away – I was elated. I really felt like that baby was just meant to be – just waiting until both Clayton and I were ready. I was absolutely astounded when I went to the doctor for that first ultrasound at 9 weeks and discovered the baby was gone… a blighted ovum. A miscarriage. I didn’t care that it happens to 25+ percent of people. It had happened to me and I was so disappointed. I was so sad.

As soon as we were able, we got pregnant again. I worried through the entire first half of the pregnancy. With both boys, my hair felt thicker – not this time… it even seemed to be falling out. I thought that may have been related to the hormone changes in my body from the miscarriage, but it was unsettling. With every positive doctor’s appointment, I doubted the good news. When I finally got the diagnosis – I thought “Well, that makes sense.” I knew something was wrong and now it had a name – trisomy 13.

At 17 weeks, a routine ultrasound hinted that that the baby’s head was measuring smaller than normal and there were also signs (although I didn’t realize it at the time – the doctors didn’t tell me then) that our lovely child had a cleft lip and palate. Told that it was just too early to identify anything definitely, we were reassured that an ultrasound 4 weeks later would put any worrisome suspicions to rest.

I was anxious for that 21 week ultrasound. There was a part of me that was pretty sure something was really wrong – but I attributed my concerns to fears from the miscarriage… besides, the fact that healthy babies were everywhere I looked was reassuring. Pregnancies were always full of bumps – but they always seemed to result in perfectly healthy little ones.

Clayton came with me for that ultrasound. I tried to discourage him from coming, but he prevailed – and it was an extraordinary blessing to have him there as our story began to unfold. I first got a sense that something was wrong when the ultrasound technician asked me how old I was and if I’d had an amnio. She then told me that they were having trouble visualizing the baby’s heart and that she was going to get a doctor. If I hadn’t already been laying down, my knees may have buckled underneath me. At that moment, I knew this little child of ours was so sick.

We were taken to another room with a level 3 ultrasound machine and while clutching my rosary beads, I heard the news go from bad to worse. Our child had a bilateral cleft lip and palate and serious anomalies with her heart, most specifically transposition of the great vessels. The doctor explained that while both these things could be repaired, when they appeared together it often indicated the presence of a syndrome. The resident who was with us raised the possibility of Down’s… but we got the impression that our own obstetrician – an older, more experienced physician – knew it was something more worrisome. She advised an amnio and we agreed because we wanted to get a better idea of what we were dealing with.

Our kind doctor called us at 8:30pm on Friday, March 23rd – Good Friday – to tell us that the amnio results had come back positive for trisomy 13. I had never heard of it – I worried that our diagnosis would be trisomy 18. I felt like I would crumble when she told me that trisomy 13 was “more severe” and “incompatible with life.” I was almost too overwhelmed to cry, but my normally stoic husband – with one hand on my stomach and the other on my shoulder – shed enough tears for us both.

The following days were spent trying to process what we had heard and understand all we could about our child’s diagnosis and prognosis. The geneticist we met with told us that termination of a trisomy 13 pregnancy was recommended… as he saw it “this was a miscarriage that should have happened… even if the baby was born and lived for years, it was still a miscarriage.” That struck me as strange. I was feeling this “miscarriage” flip around inside me for several weeks already. Thankfully, this highly skilled, but impressively insensitive doctor was accompanied by a most gentle and kind genetic counselor. I will never forget the way this lovely woman guided us through the choices of our reality with a keen attention to our hearts.

I am a Catholic and always believed that abortion was wrong. For that reason, I couldn’t believe that I actually considered terminating this most wanted pregnancy. I couldn’t stand the thought of my precious daughter suffering, just so I could say that I had “done the right thing.” I didn’t want to ride the moral “high horse” and have my little one suffer because of it. And, honestly, I am a mother – I wanted to do everything in my power to protect my beloved child from harm on earth... I would gladly sacrifice my own salvation to keep her from a bright, public, gasping-for-breath death. I believed that God would understand.

So, Clayton and I did lots of research – which choice would be easiest on the boys, who were so eagerly anticipating the arrival of a sibling? Which choice would be easiest on Maggie? Would she suffer? If she was born alive could her organs be donated to save another family from this kind of heartache?

In the end though, after being reassured that she wouldn’t suffer if I carried her to term, we just knew that we had to continue with the pregnancy. I sat at the kitchen table and looked at Clayton and through a flurry of tears just said “This is the baby I had prayed for. I wanted three children, I got three children. I wanted a girl, I’ll have a girl. I just can’t turn my back on her because she isn’t perfect.” He looked at me and stood up behind me – I don’t think he wanted me to see his own eyes full of tears – and put his hand on my shoulder. “That’s right. That’s the right thing for us to do.” I never loved or respected him more in my life. I never loved my 3 children more than I did at that moment… it was a turning point for us. And, I felt so glad that Harry, Charlie and Maggie knew that we would love them however they were – that they were perfect to us simply because they were ours.

The angst that had defined the last week gave way to a new-found feeling of peace. Deciding to carry our precious child gave us an opportunity to look beyond the sorrow and disappointment and enabled us to begin to see the joy that this journey we were sharing with our daughter could bring. It was empowering. It was scary. Mostly, though, it was peaceful. That was a surprise and a gift. I slept the night through for the first time in days.

We explained Maggie’s diagnosis to our boys with complete honesty. Like us, they tried to make sense of it all. They began working with an incredibly skilled and sensitive children’s bereavement counselor. Because our three children wouldn’t have the opportunity to make traditional memories, she helped them to make memories while they could. There are wonderful letters from our boys to their sister and beautiful photographs of them lovingly talking to Maggie in my tummy. As sad as Harry and Charlie were that wouldn’t get to keep her very long, they celebrated every moment their sister was with us.

We spent the next several months living in our state of “new normal.” We started to share our news with family, friends and clergy. We would certainly need practical and emotional support from all over – and we got it in abundance. People wrote us the most lovely letters, said the most gentle things, made the most loving gestures. We were overwhelmed by the care of so many – even those that wouldn’t have made the same choices we did.

I was lucky to have found some very supportive internet sites – and some remarkable people who had or were living our reality. I connected with one woman in particular – her name was Amber and her second daughter, due 2 days before Maggie, was diagnosed with trisomy 18. We traded emails daily… each of us sharing thoughts, worries, joys and sorrows with the other. To this day, we’ve never met (I don’t even know what she looks like!) – but, she knows me better than just about anyone and her tender care has been a salvation on some of my darkest days . Her beautiful little girl, Mary Katherine, was born still on June 2nd. It gives me great comfort to think of Mary Katherine and Maggie looking after each other in heaven as Amber and I have looked after each other here on earth.

The month immediately before her birth was hard for me. Looking at July, when Maggie was due, from the middle of March is so different than looking at July from June. Part of me was so eager to have her and just get through the inevitable – it had been such a long haul and I was eager to get through the dreadful milestones and try to move forward. But, then, I felt so guilty that I was wishing her death to come quickly just for my own sake. And, I was praying she would be born still… although I wanted to see her and have her see me, I just couldn’t imagine ever being able to part with her.

My doctor and I had decided that I wouldn’t have a c-section if Maggie seemed to be in distress during her birth -- given her condition and prognosis, the risks and recovery from this major surgery didn’t seem to make a lot of sense. But, I was very worried that might not be the right choice, especially if she ended up dying during delivery. Clayton and I also had decided to have her induced on July 11th – our family (the majority of whom lived out of town) was planning to be there on the 11th, so that they could meet our precious little girl while she was here on earth with us. The day before Maggie was born, I called the priest in a frenzy – was it alright to refuse a c-section even if it meant she might die during the delivery? Was choosing to induce her according to our schedule interfering with God’s plan, which we had chosen so deliberately to respect? Our priest was so reassuring, as he had been throughout our journey – he told me that I had followed God’s will by carrying her and that I should deliver her when and how was easiest for us. He offered to begin saying masses for her the very next day – which was remarkable, because the very next day was the day she was born.

I don’t think I will ever forget how I felt the moment I woke up and realized my water had broken, 4 weeks exactly before my due date. I wasn’t panicked, but I was startled – and apprehensive. Not scared, really, just uneasy. In the car on the way to the hospital, I looked at Clayton and said “Here we go.” He nodded to me and we both knew that the next hours were sure to be overwhelming and definitive. We’d waited months to meet our daughter and prepared in every way… but, still, we didn’t really feel ready… Would we ever be?

When I arrived at the hospital, the doctors realized that Maggie was transverse and couldn’t be turned because I had no more amniotic fluid left. There was no choice - she would have to be delivered by c-section. Our marvelous little girl was born at 3am on the 28th of June and lived for 4 incredible hours. Everyone told me that Maggie’s arrival would be joyous – I couldn’t quite believe that. How could it be? The clock on her short life would start ticking when (if) she took her first breath and I couldn’t imagine anything joyous about the ending staring us right in the face… But, then… Maggie was born. And I was never so glad to see anyone in my life.

Certainly, the medical diagnoses were correct – her cleft was bad and her color didn’t look too good, a symptom of the severity of her heart defects. She had the small head and close set eyes that were typical of a trisomy 13 baby and one of her little ears wasn’t quite formed properly (I, actually, never saw her ears. My 7 year old told me about her ear – he thought it was so cute). She was lovely – strong, spirited and special. We thought she was beautiful. She was perfect because she was ours and she had held on long enough to meet us. We discovered that when you love someone you see them with more than your eyes. I hope she thought the same about us.

She was extraordinarily present during her entire life… looking around, crying, smiling (sounds incredible – but it was true). The boys were at the hospital by 3:30am and adored her. It was incredible to see the three of them together – there was one point when Harry was holding her and Charlie was next to him, with one hand on Maggie and the other on Harry -- the three of them formed a perfect triangle – each of them sharing and receiving a lifetime of love. It was amazing – if I hadn’t seen it myself, I wouldn’t have believed it. Although we like to think that Maggie held on as long as she did for us – I know she really did it for her brothers and for herself. They all had to meet – had to be together. It was absolutely beautiful. My three perfect children all together – the pictures of that extraordinary scene are my most prized possessions.

I have two sisters with whom I am very close. I went to an all-girl’s high school and a woman’s college. My friendships with women are sustaining for me. And so, I have always thought about and looked forward to the special bond that exists between a mother and a daughter. I imagined that the unspoken connection would be all the more profound for Maggie and me because it would be us two in a household of boys… I couldn’t believe how powerfully I felt that connection when I held her. I felt like she and I were strong because of each other -- that we shared something implicit that connected us both to each other and that gave us each the strength to hang on -- and ultimately, to let go.

She was in my arms when she died. Clayton had his hand on her – and she just closed her eyes and left. It was peaceful and calm. We thought she was getting ready to leave, so the boys were in the other room… they didn’t want to be there with her when she died. It was just Clayton, me and Maggie. It was almost a relief to let her go – she looked so sick and I didn’t want her to suffer or stay around here just for us. I felt such peace to have been able to meet her, talk to her, see her eyes, have her see us and hear us… we loved her so much and she loved us right back. It was also excellent to see how in charge of her own life she was – she had such a strong will and spirit… it was palpable. Someone said that God was in charge… I’m not sure that was true. I think Maggie was in charge – God helped, of course, but really, it was her show. It was extraordinary. She was amazing.

I have always been the kind of person who likes to do the right thing. My mother used to call me her “good doobie.” I knew when we got the trisomy 13 diagnosis that I wanted to do this properly, too. I wanted to do right by my three beautiful children, right by the husband that was suffering because I had insisted on having a third child, and by God. I wanted to be an example to other people who knew our story and others who might be in our shoes someday. I wanted to walk away from this whole thing feeling as if I had done all I could for the people I loved most.

As a mother, I have always felt that it was my job to identify what my child needs and give it to them. Sometimes those needs are simple and straightforward – clean laundry, a healthy meal, a hand to cross the street safely. Maggie’s needs were not like those of my sons’. She needed us to give her a safe and peaceful transition from one world to the next. Carrying Maggie to term did that for me – it gave me the opportunity to “mother” her until she didn’t need me anymore. That knowledge made it infinitely easier to make peace with her death.

I was also humbled at how completely our prayers had been answered – by arriving as she did, I didn’t have the burdensome responsibility of deciding how or when she would be born. The doctors told me later that they thought it was unlikely she would have survived a regular delivery. And I was so relieved that God knew me better than I knew myself – in retrospect, it would have been much harder if she had been born still, as I had prayed, and we had been denied the chance to see and talk to each other.

Some of our friends had been praying for a miracle -- that her diagnosis was wrong, that she would live. When I met Maggie, I knew the miracle they had been praying for had been granted – it wasn’t the one they had intended, but it was miraculous, nonetheless. Maggie’s diagnosis wasn’t wrong – and although she wouldn’t live on this earth with us, she would live eternally. There would be no funeral mass for Maggie – instead, we had a mass of thanksgiving for the miracle that was her life. It seemed much more appropriate.

We’ve found comfort in recognizing the ways in which Maggie’s spirit lives on. Clayton and I are kinder to each other and more appreciative of our sons and other healthy children because of Maggie. Harry and Charlie understand the significance of even the briefest life and they have seen, first hand, that the joy of love is worth any sorrow it may bring. Maggie’s legacy is present in the abundant goodness and love that she created and fostered among our friends and family. There has been a memorial fund established in her name at our local Hospice chapter. Monies raised are being used to finance a new program to support families who confront prenatal diagnoses like ours, infant or neo-natal death and stillbirth. One of our friends is even running a marathon to raise funds for Maggie’s program. It is marvelous to think that because of Maggie, other families, who we will never know, will receive support through one of the toughest journeys of their lives. Maggie really left this world a better place than she found it – how many of us will be able to say that?

I miss her. And, I wish desperately that things had been different for us. This path wasn’t one I chose – and I might have done just about anything to change the inevitable outcome. I didn’t voluntarily return her to God… I had no choice. I did have a choice in how I could love her, honor her, share our journey and her life with those people that we loved and knew us. We are all better for having followed Maggie’s lead in this story. She was a gift and I am grateful, every day, that we allowed ourselves to receive it.

Back to Trisomy 13

You can read more about Trisomy 13 and receive incredible on-line support through the private message board on www.livingwithtrisomy13.org. 

-The support, information and encouragement provided by the PPFL parents is not meant to take the place of medical advice by a medical professional. Any specific questions about care should be directed to a health care professional familiar with the situation.