When it all goes wrong.
Pregnancy and childbirth are just a normal part of life. We are conditioned into believing that you decide when you want to fall pregnant, and it will happen, maybe not straight away but within a few months you will be happily announcing your coming addition to the world. And once you fall easily pregnant, in around 9 months time you will deliver a healthy, happy normal size baby by natural labour and straight afterwards you and your partner will spend time bonding with the new addition to your life. Your doctor gives you your due date and you work your life around that. You finish work 2 weeks before the due date, to give yourself time to relax before your baby is born. Your husband works his holidays out so he is with you for the birth and the first few weeks of your baby’s life. That is how society sees pregnancy and birth and for the majority of pregnancies this is exactly how it happens.
But for those of us, and I am thinking if you are looking here at our site that you have unfortunately joined us, who have experience pregnancy problems our rose coloured glasses are stripped away. We see that falling pregnant is not necessary easy and staying pregnant is even harder and making it to 40 weeks is near on impossible. Welcome to the club made up of parents who have experienced pregnancy complications. It is a club not one of us wanted to join but join we have. It’s a club that we would all like to see with closed membership, no one else to join, but that is not happening. Each day we see new members, parents of prems, parents of stillborn babies, parents suffering infertility or early pregnancy loss join our group. Each one of us has a different story to tell, our journeys are all so different yet so similar. All our story’s are about our loss of innocence, about tears and sadness, but they are also about achievements and miracles.
We can’t tell you what you can expect to happen when you have a Preterm baby. Every story is so different, even twins will travel a different path. But PIPA was born of the desire of Parents of premature babies to help others going through the same emotional roller coaster ride and for over 20 years we have carried on this work. We can share with you our experiences and some of the things we have learnt. You can read our baby’s stories to see what we have been through and gain hope from the smallest of babies. You can look at the statistics and outcomes of preterm birth in Queensland we have brought together. We can give you information on the problems that you are facing in your pregnancy or with your premature baby and where to look for more help. We can be a listening ear for you if you need to someone to talk to. We can match you up with another parent traveling a similar road to you.
The Pregnancy goes wrong
Your first introduction to the world of premature babies is usually a great shock. Instead of delivering a healthy, crying baby that is handed straight to you for a cuddle, your premature baby who rarely will cries immediately, is whisked away for immediate care. The Pediatrician will work at giving your baby the best chance of survival. If the mother gets to see her baby it is usually a quick look before the baby is hurried onto the special care nursery. If you are unwell or you delivered at a smaller hospital, you might not get to see your baby again for a couple of days. Most nurseries will provide mum with a Polaroid photo of her little one and sometimes this is all mum will get to see for a number of days. Dad gets the feeling of being divided between two places, staying with his wife or visiting his newborn child. A preterm delivery is so different to a normal delivery it is normal to feel cheated in many ways. Cheated of the first minutes of your baby’s life, of the initial bonding, of the time to check out your new baby, cheated of the chance to proudly show family and friends your baby.
Society has geared us into the idea of a chubby baby as normal, so the first view of your premature baby is something of a shock. It is often said that a very premature baby looks like a skinned rabbit and sadly it is true. A baby in a normal pregnancy lays down its body fat (called brown fat) in the last few weeks before birth. But for a baby born many weeks before this, there is not fat to fill out the body. This fat also controls the body’s ability to maintain temperature.
Many parents don’t find their baby attractive at this stage. It is hard to believe that this little thing can be the baby you have been hoping for. A very premature baby will usually be covered in a fine hair called Lanugo, their eyes will be still fused shut, there is no body fat so you will see bones through their skin – skin which is almost translucent. Most parents will admit to shock and disbelief when they first see their baby. It is also very common to have mixed feelings for your baby – the desire to love your baby unconditionally and the desire to keep a distance from such emotions because of fear that he might not survive and the need to keep from being hurt.
All these feelings are natural and in time your feelings towards her will change, you will accept that this is how it is and she is your daughter and nothing will change that. It is hard to imagine your 25 weeker ever coming home and doing the normal kid things but they do grow and sometimes they may be behind their peers but they do achieve and their achievements are even more special because of their early fight to survive.
Shock – This is just not happening. Its too early for my baby to be born, I haven’t finished the nursery yet, I am not due to stop working for another ? weeks.
Guilt – Is it something I have done or haven’t done. It is not unusual for the mother to blame herself. But in the majority of cases there is no blame to be placed.
Grief – You grieve so many things, some we have listed below. It helps to talk to your partner about what each of you is feeling, to the trained staff at your hospital, to a member of PIPA who understand what you are going through. You will find yourself grieving
The loss of normal labour. Caused by the loss of the ability to control your baby’s birth. Everything you have planned for is thrown out the window. In some cases it seems that the mum is of secondary importance to giving the baby the best chance.
The loss of the last weeks of pregnancy. Normal pregnant women often say that they have had enough in; the last few weeks, but ask a prem mum and she will tell you she would give anything to be as big as a house and still holding her baby within..
The loss of the perfect baby. This baby lying in an Intensive Care Nursery is not the baby you dreamed about. You dreamed about putting your baby to the breast straight after birth, not have it whisked away to another part of the hospital.
The loss of the baby to the Intensive Care unit. Most parents feel that once their baby is in the intensive care unit that the baby is no longer theirs but the doctors and nurses who control everything about their baby and parents are allowed into the edge of the care. This is a hard one because when your baby is first born and for many weeks following he will need the specialist care the medical staff of the unit. Our advise would be to ask what you can do to help with your baby. It might for the first few weeks just be talking to her, holding his hand or maybe you can attend to his cares, if she is being fed holding the milk syringe. The nurse do understand what you are feeling and most will try to get you involved in as many ways as possible. Just remember through all the bad days that things mostly get better and the day will come that your baby will be your baby to have and to hold all day if you want.
The loss of what might have been.
The loss of innocence even if you have another pregnancy you will never regain the innocence of thinking everything will be ok (and it quite often is ok for a subsequent pregnancy)
The loss of walking out of hospital after giving birth carrying your baby. The hardest thing I think any mother will be asked to do is to walk out of a hospital after giving birth to a baby without that child. It usually not possible for mum to stay in hospital for the whole time her baby is. Your baby could be in hospital for anything up to 16 or more weeks, so at some time you will have to walk out of the hospital with empty arms. In your head you know that the ICU is the best place for your baby at that time but in your heart you just want to have your baby with you. Take comfort in knowing your baby is in good hands and that you can visit or ring anytime.
Don’t be afraid to grieve all these things. Each one of us has and many find years later still hurting from an insensitive remark made about pregnancy. Give yourself the right to feel the loss of your perfect pregnancy.
Anger –Is another emotion you will go through.
Anger that it was your baby that was born prematurely,
Anger at the doctors
Anger that God let this happen
Anger at other pregnant women who don’t seem to be as careful as you were. Why you and your baby and not them?
Anger at yourself, that it was your body that let your baby down.
All these feelings are normal for parents experiencing the early birth of their baby. Added to the premature birth is also the worry for your baby. Will he survive, will she ever be ‘normal’. For some these feeling last for many months after the birth even after their baby is out of danger and on the way home. Allow yourself to feel these emotions. Cry if you need to, never be ashamed to show that emotion. Talk to your nurses, your partner, your family, the hospital social worker, other parents, or support group like PIPA volunteers. These emotions can cause sleeplessness or other physical symptoms. If you find this is happening to you talk to your local doctor.
The primary aim of PIPA is to provide practical and emotional support to the parents and families of premature infants. However we do not offer professional advice. We are parents of preterm baby’s and not medical staff. We do offer understanding, support, encouragement and friendship.