Willow's story

The year 2003 started just like any other. I don't recall that I even bothered to stay awake to see the New Year in. What I didn't know was that just over a year later I would bury my first born child, the daughter that I had longed for since I was a young girl myself.

My husband, Robert, had a vasectomy after conceiving two children in his first marriage. So in January 2003, after fostering 60 children (we still care for foster children today), paying $2600 for a failed vasectomy reversal (somehow we managed to save the money by me working crazy hours while I was also studying full-time at University), applying to adopt but being asked to withdraw our application (a long story in itself...to do with not being allowed to foster and adopt at the same time), we found ourselves at the ISIS clinic, Waikato Hospital, where miracles are birthed.

We were delighted to find that we were eligible for one cycle of IVF treatment through government funding - without which we would still be trying desperately to save the necessary $10,000. March and April were spent giving myself daily injections and having numerous blood tests and procedures for our TESA/PESA/IVF/ICSI. It was all worth it when 14 days after my embryo replacement procedure we found I was pregnant. We had only two embryos survive the three day incubation period between fertilisation and replacement so they had both been replaced. I was very aware that since we had managed to conceive that was the end of our government funding. If I miscarried there was no second chance. It was a long wait till our 8 week scan when we could see if I was expecting a single baby or twins. Finally the day arrived. Our two little embryos, whom we had seen under a microscope when they just consisted of 8 cells, were now two little blobs with beating hearts! I always wanted twins.

Physically I had a very easy pregnancy. I had a little bleeding at 10 weeks that gave me a bit of a scare, but a follow up scan gave no answer to the bleeding. At 13 weeks our nuchal scan was clear. Twin A was a few days smaller than B, but there were no other noticeable abnormalities. Our routine scan at 19.5 weeks showed a substantial difference in size between the babies - both still within the range of normal, but at the two extremes. Our first clue to something being seriously wrong was when the radiologist left the room for 15 minutes to consult another doctor. Robert was determined not to know our babies' sex, but it became a matter of eliminating twin to twin transfusion syndrome - if they were different sexes they couldn't be identical and subsequently couldn't have TTTS. Twin A was a little girl, twin B a boy. There were some questions about our little girl's brain development and lack of amniotic fluid, the possibility of downs syndrome was mentioned. We named our daughter Willow Kristy Ana and our son Zachary Kristin Asa. They were already very real to us. Though at this stage we didn't tell others what their names were, we called them by name at home and frequently watched their scan videos.

A follow up scan was performed two weeks later. The doctors were brief, unclear, and reluctant to express their thoughts. They now suggested more severe chromosome abnormalities, trisomy 13 or 18, but didn't explain what that meant. Armed with little information I made it my mission to find out how this was going to effect our daughter's future. The internet gave me answers I didn't want to hear. If she made it past the 10% chance of celebrating her first birthday, she would probably never walk or talk. We were referred to the hospital.

Another week passed and at 22.5 weeks the hospital repeated the scans. This time we were given a more accurate and honest opinion. Willow was more than two weeks smaller than she should have been and had very little fluid around her such that the membrane between her and Zachary hugged her silhouette. Her brain showed fluid on the cerebellum, possibly dandy walker syndrome. She looked perfect to us. She was a little fighter, kicking her brother and sucking her thumb. We had everyone we knew praying for our little girl. We were warned of her life expectancy being short, but no one really suggested that she might not survive the pregnancy. The possibility of bringing up a child with severe disabilities somehow didn't scare us, we just wanted our little girl to live.

On the 7th of October I attended an appointment with my midwife. She was not sure if she could hear two heartbeats or just one. I think she knew, but didn't want to have to suggest it. I didn't tell anyone what my heart told me, not even my husband. At 25 weeks I received an early morning phone call from my family. My father had been admitted to hospital the night before with a heart attack. They had delayed telling me to avoid me stressing all night when I had enough to worry about. I was booked for an early morning hospital appointment with my obstetrician. Dad was in a stable condition so I planned to visit him immediately after my appointment. Robert had attended all of our scans and taken substantial time off work, so we decided to save his time off. I turned up to the appointment by myself with 3 pre-school foster kids in tow. Willow's heartbeat could not be found. An immediate scan confirmed that our little girl had died. Final measurements suggested that she had not lived long past our previous scan. Her time of death was estimated at 23 weeks - though she was only the size of a 20 week old baby. The hardest phone call I have ever made was to ask my husband to come to the hospital as soon as possible. I didn't need to say why.

My dad recovered well and the rest of my pregnancy consisted of constant doctors' appointments. I was admitted to hospital at 26.5 weeks with suspected premature labour due to contractions every 5 minutes and possible leaking of amniotic fluid. I was given two doses of steroids, monitored regularly, and shown around the Newborn Intensive Care Unit. After two nights, and settling contractions, I was allowed to return home. I was scanned, saw my obstetrician, and had a blood test a least once a fortnight. I saw my midwife the weeks in-between. By 30 weeks I was having at least one CTG every week. Some showed our little man's heart rate dropping with contractions and he didn't move as much as they expected at this stage. After losing Willow, I worried lots about our little man, though I knew the hospital was taking every precaution for us.

I brought myself a ring to remember my daughter by and had it engraved inside with a heart and the letters WKAM, my daughter's initials. I also started on a memory book for her - it kept me busy while I waited. Eventually I was booked for an induction at 37 weeks. The condition that Willow would be in at that stage appeared to be unknown territory as anyone I had spoken to had delivered within a couple of months of one of their babies dying. In our final month Willow had disappeared on our scans underneath Zachary. I will always remember one scan when I asked the radiologist what Willow might look like upon delivery and was told "well honestly she might look like steak & kidney stew"

Five days before my induction date we went to visit a 10 month old foster child whom, after 6 months in our care, had just shifted to another placement. I think my body subconsciously decided that he was happy and settled now, so it was ok to have my own baby. My first contractions started while we were visiting. I rang my midwife that afternoon and arrived at the hospital at 8.30pm, 5-6cm dilated. I was told it might all be over before midnight. Robert and I spent the next couple of hours watching TV and playing cards. Anything to take our minds off the reality of what we were about to have to deal with.

On 4th January 2004 our twins were born. Willow Kristy Ana was delivered at 3.08am weighing only 90grams. Zachary Kristin Asa was born at 5.56am and weighed 2520grams (5lb 8oz). It was a long labour. Our midwife thought that I was 9.5cm dilated when Willow was born. It wasn't until after she was delivered and my contractions slowed down that they realised I was only 8.5cm. Willow was wrapped in a blanket and placed at the end of Zachary's bassinet. There were a number of dramas during Zachary's delivery, but we won't go into that now (got stuck, heart rate dropped, very close to emergency caesarean, etc. etc.). Robert was able to cut both of our babies' umbilical cords and give Zachary oxygen until he got the hang of breathing by himself. Though Willow's body had obviously deteriorated after dying in-utero 13 weeks prior to her birth, she still had perfectly formed limbs and even tiny fingernails. Our midwife placed Willow in a little box and lay the SANDS supplied gown over her as she was too fragile & little to dress properly. She stayed at the end of Zachary's bassinet until the funeral home picked her up later that afternoon. Willow's death was officially recorded as the result of dandy walker syndrome. We didn't want an autopsy, so we will never know if she also had trisomy 18.

Zachary and I spent a couple of days together in hospital. Despite his early arrival at 36 weeks we were released home after 48 hours. The staff were happy that Zachary was maintaining his temperature and breast feeding well. I was glad to be home. We had a burial to arrange. We kept it simple and intimate. On the 8th of January Robert and I, Zachary, my parents, my sister, our wonderful midwife, and a funeral director remembered Willow by her graveside at a cemetery five minutes walk from our home.

One thing I regret is that I never touched her... I never rolled her over to see her face... I never gave her a hug... or a kiss... and now I can't.

I didn't realise how much I was hurting inside, how much I was bottling up, until Mothers Day 2004. It should have been a really happy day. My first proper Mothers Day, with my own biological child. Instead, I spent the whole day on the verge of tears. I'm a mother of twins, but I only had one baby to hug. I haven't looked at our scan videos since Willow passed away, but I know that they are a precious keepsake and when I am ready they will be waiting for me.

2003 is a year I will never forget. A year with more joys and more challenges than I had ever experienced. I think about my daughter every single day. I see her every time I look in the eyes of my precious son. I long to touch her, to see her grow. I know there will be many more milestones, birthdays, Christmases, and Mothers Days where I should be celebrating but will be quietly grieving inside.

The day I buried my daughter I buried part of me. I buried part of my husband and I buried part of my son. We are all broken. Only God can mend the holes. I thank those who continue to help us hold the pieces together at times when our faith is low.

I'd especially like to thank those at Twin and Multiple Birth Loss NZ www.twinloss.org.nz through whose stories I have been able to gain comfort in the fact that we are not alone, others have trod this path before. Their quarterly magazines never fail to make me cry as they slowly help me to grieve.

...Written 2004

Sept 2006... As we now head towards our daughters 3rd anniversary we are able to reflect upon her life with an occasional smile. In the depth of pain it is so hard to see the light at the end of the tunnel but it does slowly brighten. It is quite an interesting dynamic bringing up a surviving twin, you are constantly seeing all their milestones and wonder what their twin would be doing. Regret is a grave thing, I still regret not holding Willow. Though she was at the end of Zach's bed for the first morning, visitors came and they didn't know she was there. I sneaked a couple of peaks but I kind of felt embarrassed/naughty to want to see/touch my daughter, scared a nurse or visitor would catch me. I don't know, I guess it was pride too, I didn't want to show any weakness. It took me 2 years to view Willow's scan videos but I am sooo glad that I have them, seeing her kick her brother strangely reassures me that I am allowed to grieve. Though others may have stopped mentioning her, the videos are proof that she did exist, and was very much alive. I find being able to share Willow's story very healing, it gives purpose to her short life to be able to help others going through similiar situations. I have learnt some things about grief over time...1. That time does ease the pain but you will never forget, 2. That the most predictable thing about grief is that it is unpredictable - a wave of pain will hit you when you least suspect it, and 3. That there will always be times when you will just need to put one foot in front of the other and hope that your support networks are laying the cobles to stand on.

By Rebecca M

   

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