A parent’s reflection

Our son, born May 2001, lived for 5 days. Our daughter born October 2002, is now aged almost 5 months.

I had a miscarriage in May 2000 which made us very unhappy. We were delighted when I got pregnant again later that year. Our baby was due in early June 2001 and the pregnancy was an apparently normal, healthy one.

At 38 weeks, 3 days after having had a normal routine check with my obstetrician, I suddenly noticed the baby’s movements cease. My husband rushed me to the hospital where I was found to have very high blood pressure and was diagnosed with severe, sudden-onset pre-eclampsia. The placenta was assumed to have suffered a serious restriction of the blood supply in the previous few hours. This would have cut the baby’s oxygen supply down dramatically. He suffered from further asphyxia during the time taken to stabilise my blood pressure for an emergency caesarean section. He was born that morning, weighing 2.36kg. He was born looking perfect (and beautiful), but he was in fact very sick, and he died 5 days later, in our arms. Although his life began with some hope, we knew for about the last 3 of those 5 days that he would die.

It goes without saying that this time, and the months that followed, were the most awful in our lives. Our lives are changed forever, and we do not look at the world, or the people in it, in the same light as before. There are many tragedies in the world, and the death of a desperately loved little baby, and the fear that he has suffered, is one of them.

I knew before our son died that I wanted another child, and as soon as possible. Before a fortnight or so had passed my husband felt the same. I felt guilty even thinking about it when we had not even had our son’s funeral. At first were afraid we might be advised not to have another child. Apart from the damage pre-eclampsia could cause to another baby, it had almost killed me. My obstetrician saved my life; he reckoned I was about 6 hours from a coma. I was desperate to have another child (if having our son back was not possible) – this was more important to me at the time than to my husband, who felt we still had each other.

After many tests we were given a 25% chance of recurrence of this type of pre-eclampsia with every subsequent pregnancy. This doesn’t sound very promising, but we were enormously encouraged! I was advised to wait a year before trying to get pregnant again, to allow my kidneys to recover (without which the pre-eclampsia was more likely to recur). The months that followed were awful for us both, and I had no focus and pretty little interest in life. I felt as though my body had killed our son. At times I felt as though I wanted to die with him. I was very angry about pre-eclampsia and the lack of knowledge and discourse about this devastating condition. I did everything I could to find out about pre-eclampsia, management and outcomes. I was angry with women with healthy children who would casually say ‘oh yeah, I had pre-eclampsia’ and angry when they didn’t understand that my pre-eclampsia had not been mild, or gradual, or of a nature to be manageable even by an expert obstetrician. After going through a short phase of wanting to talk about our experience, I clamped up. My husband would not discuss it with anyone but me.

We formed new views of our friends and family; some rallied around, and we had marvellous support from unexpected quarters, yet others disappointed us bitterly – and still do. We were made to feel as though we were a weird breed of outcast: childless parents. At times I was treated as if I had never experienced pregnancy or motherhood. If it weren’t for my mother, my sister, and a few others, I would feel as though our son had never lived. My mother and sister in particular do everything they can to keep his memory alive for us.

Amazingly, after 9 months my kidney function tests were normal and we were given the ‘green light’ – miraculously our daughter was conceived within a couple of days! It gave me the feeling that she was really determined, right from the start. During the pregnancy our feelings were an odd mix of hope and optimism on the one hand, and anxiety and fear on the other. We could not even imagine ever being able to bring home our own baby. All we wanted was a baby who did not need tubes to survive. I had to take aspirin and calcium supplements from conception, and although these are not proven to combat pre-eclampsia, it made us feel we were doing something to prevent it.

We did not tell anyone but a few special people, my family and my husband’s father included, till I was 20 or so weeks’ pregnant, at which time we also told them that we were expecting a daughter, and announced her name. I desperately wanted to name her after my sister, so we used my sister’s name as her middle name. For us it had been very important to find out the sex, and to name the baby and give her a new identity as soon as possible. That way she would be with us for as long as possible, if she were to die too. And people were going to be made to acknowledge her! We were both relieved to discover she was a girl. I was sure this would mean I would not hallucinate that I was pregnant with our son again (there were some moments in the pregnancy when I felt as though I was, especially when I began to feel her moving). Although part of me would love a boy so that some day I might know what our son would have been like, I am still scared of having another.

From around 24 weeks the pregnancy became very different from the first. Whereas the first had been carefree and joyous, this time I had to rest and have frequent foetal and placental monitoring (each of which were in themselves roller-coaster events), and of course we began to feel as if we were on the edge of a cliff. If she were born early she would be susceptible to the problems of prematurity, but if we left it too late she could be injured by sudden-onset pre-eclampsia.

As time went on and the results of the foetal and placental monitoring continued to return normal results, it became evident she would not have to be born prematurely. We couldn’t believe our luck. In the end it was decided that she would be born at 37 weeks if all continued to go well. I probably felt better than anyone else during the later weeks; my husband was terribly fraught, and my mother and sister, despite being 20,000km away, were deeply involved (my mother was the only member of my family to see our son, but only in the funeral parlour). We were dreading the c-section and could only think of the last time when everything had gone wrong.

The last few days were a dreadful strain – we ended up having the caesarean section a few days early, as we just couldn’t take the strain any more. My husband was beside himself during the operation and wept openly with anxiety and stress. Suddenly she was there, safe and sound, with no signs of pre-eclampsia. I shall never forget the paediatrician telling me that the amniotic fluid was clear, and then hearing Madam scream for the first time! Instantly she reminded us of our darling son – this shocked us, and still does. Some people have tried to tell us there’s no resemblance, in a vain attempt to make us feel better! They don’t seem to realise we love the way they look alike. I would find comfort in any similarity, for example, if they had shared their birthdays.

Our main emotion in the first few days was relief, not happiness – I think it took a while for us to accept that she had safely arrived and to enjoy her. I also felt relief that we had a least one living child (as opposed to being childless for the rest of our lives). Every time she got us up in the night, we felt no frustration or dismay, simply happiness and relief that she was able to do so! I had expressed milk for our son when he was in the Neonatal Unit, so breastfeeding was a bittersweet time as well (and still is). When the baby blues hit in, it was all focussed on our son. Almost no-one except my husband and my sister really understood this. Much of this came from the fact that our daughter was innocently doing things (crying, moving, etc.) which our son had not been able to do.

Of course everyone was delighted for us (some were evidently relieved that we were now ‘better’. Some friends who had avoided us when our son died got back in contact when they heard we had had our daughter safely. We have not met up with them). Even some of those closest to us did not understand that although our daughter was utterly delightful and deeply loved, she was no replacement for our first child. I still can’t look at children his age without feeling sick.

Immediately after our daughter was born, I could not face attending the local mothers’ group, but I did recently join the next intake of mums, and find myself enjoying the sessions and making friends. We want our daughter’s childhood to be as normal as possible, and we would love to have more children, hopefully as soon as possible. Each pregnancy will be assumed to be high risk and monitored in the same way, and the delivery planned, but we hope we have hit on a winning formula.

Kate S’s story, mother of Hamish who died suddenly and unexpectedly from whooping cough on 23/10/00

Because Hamish was our only child, we noticed as soon as we came home from the hospital how cold and empty our house seemed without him. For Cayle, the decision to have another baby happened in the first 24 hours; I was more reluctant, thinking that we would fall straight away and people would think that we were “moving on” too quickly. But it was in the first week that we decided all we wanted was a little baby back in our arms.

The best thing we did after this decision was to buy a puppy for me to give all my maternal feelings to, until were parents again, knowing that this would be 10 months away at the least. We ended up with a very loved and spoilt dog (Oscar), but I will be grateful to him forever for pulling me out of some of the worst slumps in my life. He gave me something to get up for because he needed to be taken care of.

As it turned out, it took six months for us to fall pregnant, and every disappointing month I focused on it happening “the next time”. But in hindsight, we really needed this time to come to terms with our loss, and I don’t think I could have coped with a pregnancy in this time. It would have been too high stress for myself and the baby. But I don’t regret making the decision to try straight away, as the hope of falling pregnant gave us a goal to focus on and took us from month to month.

During my pregnancy I could not relax until the 32 week mark, as I felt that I would miscarry before this time, and after 32 weeks the baby has a good chance of survival if born premmie. At this moment I am 2 days off my due date, and have many fears concerning a safe delivery. I am so aware of how many things can go wrong and now even though Hamish died of an illness, I am afraid of my baby being stillborn, and if she survives this fear, then she may die of SIDS. One thing is certain, and that is I find it very hard to see my baby reach past three months of age. I have bought larger clothes for next summer to be a little bit optimistic, but still cannot see her getting the chance to wear them.

We found out the sex of our baby after having an amnio, which determined she was a girl. I was fleetingly disappointed, Cayle much more so, all he wanted was his little man back. I was relieved after a short time, because having a girl felt like a fresh start with not so many comparisons to her brother. It also meant that the decision not to use Hamish’s clothes on her was much easier. We went out and bought a whole new lot of pink clothes, and redecorated Hamish’s room in feminine style, so that it was barely recognisable. We kept all the same furniture.

When trying to conceive, the thought that I might be due around Hamish’s birthday in August, or his anniversary in October, was always in the back of my mind, so on these particular months for conception, we probably didn’t “try” as hard, but did not give up altogether because at this stage I was set on the task at hand to fall pregnant. Fortunately it did not happen and the baby is due in January, which had no meaning for us concerning Hamish.

We decided to go back to the same hospital to have our baby, because they looked after me so well when I stayed there before Hamish’s birth. When he was sick they did everything possible to take care of him, and we could not fault them for anything, so I know that my baby will be in good hands.

Postscript

Our subsequent baby, a beautiful baby girl Brielle, was born 15 months after Hamish passed away. She was a week overdue and because I was so stressed out, my doctor decided to induce me, and she was born a quick two and a half hours later. I surprised myself and others around me, at how calm and relaxed I was straight after the birth holding my new baby in my arms. The fears I felt for Brielle’s safety all through the pregnancy just melted away at this point. Somehow I knew she would be our saviour and would never leave us.

I decided not to use a sleeping monitor, as I knew they were not lifesaving devices, and would probably cause us less sleep. She slept in her own room from the night she came home, and when I put her to bed every night, I slept soundly, knowing that I had followed all the ‘safe sleeping’ advice, and so I had done everything I could to make sure she would survive each night.

It was hard becoming attached to her in the first month. Both Cayle and I loved her deeply, but at the same time we were afraid of her. After that initial adjustment period, we allowed ourselves to become closer to her every day, and now she is the centre of our universe. At 14 months of age, Brielle is certainly a wild child, and she is amazing us all the time with the new things she is learning every day. I am so thankful that we did decide to have another child so soon after we lost Hamish, because she has not replaced him in any way, but she has helped to heal our hearts and to let us trust again. We are now 27 weeks’ pregnant with our third baby, and it has certainly been a much more relaxed and different journey than Brielle’s pregnancy. I am much more confident with this pregnancy, now that Brielle proved me wrong and lived past her first year. We still think of Hamish every day, and his birthdays and anniversaries are especially hard, but having other children to focus on and give all your love to, makes each day easier to breathe.

Kate D’s story, mother of Lily who died of SIDS on 26/11/00

Family at that time:

Mum – Kate

Dad – Simon

D’Arcy – 5 years old

Hamish – 4 years old

Amelia – 3 years old

Lily – died at 6 weeks

I was on drugs for epilepsy during all my pregnancies. When I went on to a new drug to manage my epilepsy I was told I had to consider having no more children. I persuaded my neurologist that I should be allowed to have another baby and to breastfeed her. I feel guilty now about pushing for that. However there is no evidence/proof that Lily’s death was related to the drug. But as a mum there is incredible guilt that goes with losing a baby regardless, so if there is an extra reason for the guilt it is not a help.

I feel that it is a waste feeling so guilty. I have got better at coping with it – it is very destructive to feel that way. It is like a huge bridge that I couldn’t climb over. The guilt fuels the grief.

Lily, our fourth child, was born on 12th October 2000. She lived for 6 weeks, 2 days and died on 26th November. She was loved to the point of excluding everyone else – I was very selfish in my love for her. I didn’t exclude my other children, but I did exclude my husband. I knew she was the last one (because of difficulties with being pregnant) – so she was cherished by all of us – my husband, my kids and myself.

The night before she died, Simon was going out. I was starting to feel an incredible lack of freedom owing to our four young children and resented his going. I took Lily into my bed and played with her for four hours. I thought ‘I don’t care you are out, I’ve got the most beautiful baby in the world in my bed.’ Simon came home a bit later. Lily stayed with us and we went to sleep.

I was relaxing and dozing after feeding her about 6 o’clock in the morning when the kids came barging in to give her a kiss. I said “Can’t you for once just let her wake up normally. You’re always giving her kisses and ruining her sleep.” Then we realised that she was in trouble and not breathing. I sat up. I looked at her and saw she had haemorrhaged all over the place.

I screamed at the kids to get out of the room. I said to Simon to resuscitate her and I would call an ambulance.

The ambulance came and Simon carried her out to them. He sat like a shattered man on the kerb whilst they tried to revive her. He didn’t want to go to the hospital with her in the ambulance – he knew. He saw more than I did.

All this is in your head when you think about having another baby.

We didn’t start thinking about having another baby for a while – probably about 3 or 4 months later. I felt so cheated out of my motherhood – even though I had these other beautiful children. I felt so cheated: “empty arms” describes it.

I started to talk to Simon about it; I had to push for him to agree to having Lily. So this time it didn’t take too much convincing. He was devastated. Very few people asked how Simon was doing – they asked how I was doing. We both feel that this is very unjust. He was so pleased that he had got to know Lily. He was freelancing at the time she was born, and he had the time to get to know, love and grow attached to her. I don’t think he needed a baby like I needed a baby. The main issue for him was that something might happen again.

I was really scared too. I didn’t really talk to anyone about it. I knew my family were so worried about me – not wanting me to be hurt again. They said it was too soon. And yes, it was too soon. But then there isn’t a good time. It would always be too soon. I wasn’t prepared for the fact that being pregnant would open up my grief and issues that hadn’t even been realised.

Just a short time before I found I was pregnant, Simon decided, “No – we have three beautiful children and we will give everything to them.” I felt that this was a valid decision and I agreed with him. I got a job and decided our life would take a different turn by not having another child. I would start focussing more on our three living children.

I found out the weekend before I started work that I was pregnant. I told Simon, but I couldn’t tell anyone for 15 weeks because I was having so much difficulty in dealing with it. I was so worried about everyone’s reaction – that they would think we were replacing Lily. I knew my family would forgive and understand me. I was so scared for us, for our kids and our families. I didn’t want SIDS to strike again. It wasn’t supposed to happen in the first place. These things are supposed to happen to other people – not to us. I didn’t want to go through another sickly pregnancy again. I wanted Lily back.

After I started telling people, their kind, generous reactions helped me to come to terms with this as a good thing. Although in life sometimes good things are hard.

When I told Simon, he was very matter of fact. “Well it’s done now.” I know he has had a hard time coping with his fears like I have – and still do. But he was lovely in his acceptance.

We told the kids at about 16 weeks. They have been so excited. At first they thought I was having Lily again – that took a lot of explaining. The children have fears. D’Arcy has fears. Last week Hamish said he was looking forward to going to the zoo after his birthday. He said “Will we do it after this baby dies?” I said “Hamish, not all babies die.” Then he talked about Lily.

I’ve been overwhelmed by our children since Lily’s death. I never would have believed such young children could grieve so strongly and perceive future situations with such maturity.

Lily’s death caused grief to my five siblings and Simon’s four siblings. We have wonderful memories of Lily, but we can’t think of them without crying: there is so much sadness because of what we have missed. I know this baby will bring so much happiness back into our family. Even now it is not always a sad house.

The big reason for having another pregnancy was that we didn’t want to always live in sadness. The amazing hole left by Lily’s death will not close, but a new baby will bring a lot of pleasure not only to me, but to Simon and the kids.

Postscript

Lily’s youngest brother Finn was born fourteen months after Lily’s death. He is a beautiful redhead. Finn’s delivery was short and uneventful: I just wanted him out. I had wanted a girl really badly; however, when he was given to me all wrapped up and the doctor asked me to look and see what sex he was, I remember just cuddling this beautiful new life and saying that I didn’t care. This baby had arrived alive and well and that was all that mattered.

The end of my pregnancy was not so good. I had three scares. At 32 weeks I was hurried to Melbourne by ambulance causing both Simon and myself great panic. However they managed to stop these impending labours.

Once the time came for Finn to be induced Simon and I felt great relief as we had been through emotional turmoil and worry. I kept asking the doctor if he would die and he said, “No, he will grow to be an old man.” How generous! He could never guarantee this but he knew at the time, I needed to hear those words.

We both knew that the first six weeks of Finn’s life would be difficult. We had all these reminders with all our children looking very much alike. We also had the worry for no other reason than that the unthinkable had happened before. If he didn’t die of SIDS he could die of numerous other things which we were fairly oblivious to with our other children. Simon is incredibly protective of Finn and I think will always be. I was a mess a lot of the time and could feel myself holding back from loving him to try and protect myself. Simon coped by just being overprotective.

Logically I realise that a child can die from SIDS at any time in their first two years or more. However on the evening of Finn’s life when he was six weeks and one day old I was petrified. He was a little bit sniffly from a cold as Lily had been that night in her life and I was terrified. I ended up sitting upright with Finn at my chest so he could breathe more easily. When he awoke upright the next morning I was exhilarated that he was still with us. It was only then I realised how much I loved him and how right our decision was to have him.

The kids have been delighted with Finn. Having Finn for them has been really healing and so much fun. Amelia I know cannot remember much about Lily’s life, but she will never forget the sadness of her passing, I am sure.

Hamish and D’Arcy both remember. D’Arcy the other day said with so much passion, “When we die we will go up to heaven to see our beautiful Lily Grace and we won’t have to cry anymore”. Hamish asked me, “Did you know, Mum, that some families have babies that don’t die?” He is starting to realise that we are an exception to the rule rather than “the norm”.

For me, Finn has brought me so much love that only comes with a new baby. The pain of my pregnancy was all worth it as we have a beautiful boy to love and cherish. I now feel as complete as I ever will. I will always want my five babies in my arms but know that I will only ever have my fourth child in my heart.

Last reviewed: 17/11/24