Timothy was small for his age. He had blonde hair and blue eyes that would light up lovingly whenever he saw his big brother. At 6 years and nearly 2 years, they were best buddies. He was not a baby anymore. He was a little boy with all the normal "little boy" traits: he talked non-stop, ran, kicked a ball, laughed at Humphrey Bear, and, at 21 months and 19 days, he died.
For all parents, the thought of cot death is there until that magical "12-month" mark where the child apparently becomes invulnerable. So much greater the shock therefore when on a September morning, I found my little boy dead in his cot.
The immediate "post-SIDS" problems are documented in many places, but I wish to draw attention to a problem that I have not found to be addressed anywhere and involves the issues surrounding having subsequent children.
Timothy died in September. In November, I fell pregnant. I was sick. Not physically, but mentally and emotionally. I had barely laid my child to rest in the ground when the hormones of pregnancy took control of my body. I had no desperate desire for a daughter, but this child had to be a girl, simply to be different. I rearranged the house so the baby would be in a different room. I thought long and hard about monitoring, but decided it was not the answer. The only answer was to watch the child till he/she was one day older than Timmy had been. Only then would the child be safe. At 37 weeks, the emotional drain was too much, and I could no longer cope with the pregnancy. A scan was done to ensure the child was large enough to be delivered with a view to induction. The scan also told me however, that I was to deliver another boy.
After 15 hours labour (the contractions of which I tried to fight " to prevent the child from being born " thereby preventing it from dying!), I was delivered of a 2.7kg boy.
Once the reality of a baby was with me, I decided that the only way I could cope was to make as much as possible different. I would breastfeed, for surely that would afford me some protection. Evan though had different ideas. Much later it was discovered he had a medical problem, which prevented him feeding properly but by the time this was discovered, it was too late. So along with the "post natal blues" and still grieving for Timmy, I now had to contend with feelings of rejection from my new baby. I eventually convinced the doctor that we would both do much better at home and if he wanted a healthy baby, my sanity was of paramount importance. So at 5 days of age, I took home a 3-week premature child who was not feeding properly and still jaundiced.
In hindsight the first few days were not too bad. I could put him down and leave him, but only for short times, however, as he grew older I felt there was no alternative but to be continually beside him as he slept. I felt that once he was past the same age Timothy had been, he would be OK, but until then I could not relax. I had to watch him as he slept " always. There were times when I had to leave him alone, but they were few, and while away from my sleeping child, I would feel physically ill.
When Evan was barely seven months old, I found I was pregnant again. The thought of two children under 16 months was daunting enough, but with the continued stress of Evan it was unbearable. Without the support of my Community Health Nurse I would not have made it to the following November when another son, Andrew, was born.
In my eyes, Andrew was not at risk of SIDS because he was far too young. Evan was approaching the "danger age". Statistics would say differently but emotions talk louder than statistics in situations like this. Andrew would be fed, changed, put down and left so that I could watch Evan. He was, in my mind, in great danger as he approached that magical age. Ironically, his milestone of 21 months and 20 days fell on Mothers' Day. What a present! That night I slept for 14 hours.
Now, however, it was time to turn my attention to Andrew. I began to enjoy Evan since he was now "safe", but my enjoyment of him was hampered by increasing fears for Andrew as he got older, but whether through exhaustion or a little confidence through having got Evan past that mark, the fears were not as strong as previously. It was only as he approached the 18-month mark (by which time I was pregnant again) that I started watching and checking him every 10-15 minutes. He passed that age safely and for a short time I was able, for the first time, to enjoy my two baby boys.
In October of 1988, I delivered a little girl. After four boys, this was a shock! After four boys though, she was also very precious. The sick fear started again within hours of her birth. They became so real it was not a matter of "what if I lose her" but more "when I lose her". She was constantly watched and hovered over until she too reached that magical age.
As horrific as it would be to lose a child to cancer or through a car accident, at least those parents have a reason for their child's death. There is something to blame. What have we, as SIDS parents, got to blame? When medical science can give us no reason, we tend to look inwardly for the answers as to why our child died. I, together with every other SIDS parent, laid the blame solely with myself. This guilt and blame is natural and normal to varying degrees, but when subsequent children arrive, it becomes magnified beyond all proportion. It is a problem that must be recognized by professional and lay-people alike. I found that friends could not understand my dilemma. Their attitude was that another baby would take away the pain of loss, but that is not so. The consequences of SIDS are far reaching. Through speaking with other SIDS parents, I have found that for every family there is a landmark point " a point at which a subsequent child will, for the parents, be "safe" " in the family where the child died the day after baptism, for a subsequent child, the baptism was postponed and postponed and only through intensive counselling and support could the parents go ahead with it. Where the SIDS child has been a first-born and therefore no family history of having parented "successfully", to even contemplate another child takes enormous courage and the parents need professional, caring and empathetic support.
The worst of all situations though seems to be the unresolved guilt and blame. There are cases where the father has blamed the mother to the point of having her actually believe that she killed the baby in some way. These situations end inevitably in the break down of the entire family. The written literature and statistics state fact, but what is not mentioned is the enormous hold our emotions have on us and how they can make life intolerable when they take over the mind. All cases have a milestone that must be reached, most commonly the age at which the SIDS baby died. When the child is one day older, life regains some normality. Many times I have said, "If Timothy had to die, why couldn't it have been at 6 weeks, instead of nearly 2 years". Such a long time! Not every SIDS parent has a Community Nurse like I was blessed with, but most, sadly, have doctors like mine who do not understand and simply reach for the prescription pad.
This is not the answer!
The answer lies in community awareness of the problem and recognition of the symptoms as a reality. The mother thinks she is the only one feeling this way and does not speak out for fear of ridicule. She is told that statistically it will not happen again in the same family, but her emotions tell her that it will happen again unless she personally prevents it. If there were something to blame, bearing subsequent children would be easier. It is the unknown that causes hell.
From my experience of having three subsequent children, there are two groups who can help solve the issues " the Community Health Nurses and family doctors. These professionals are going to have the greatest contact with the family and have the necessary support available, but they, as professionals must first be aware of the problems and accept that there is a real and vital need for help. Most Health Nurses and G.P.s are overworked and as a consequence we have all experienced the feeling of having been rushed through a consultation and coming away feeling far from satisfied. It is imperative that the mother asserts herself at this point, recognizes that she has a problem, and takes steps to avail herself of all the time she needs with her professional contact by making a double appointment or asking for the last appointment of the day. There may be times when temporary medication is necessary but the role of the G.P. must not be simply one of writing prescriptions. Probably the best thing a mother preparing for the birth of a subsequent child can do, is to establish a good rapport with professionals well before the birth and to ensure those professionals are fully aware of the situation and her feelings.
Creating public awareness is probably the hardest thing that needs to be done. The attitude of "another baby will make it better" must be removed. How this can be done I do not know. Perhaps this should be a topic at seminars of people far more learned than I. My role as a mother of subsequent children has opened my eyes enormously and I have been happy to speak to other mothers during their subsequent pregnancies and hopefully thereby helped them.
SIDS parents must be told that there is life after SIDS but it does not come easily.
Subsequent Child Syndrome is a reality.