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It is a good idea to think about what you would like to happen when your baby is born, to ensure that everyone fully understands your wishes prior to the delivery.  Doing this in advance allows you to talk over the options with the medical professionals and your family.  It also helps reduce the stress at the time of delivery and enables you to enjoy your time with your baby.

Every child will have different needs and every family will have different ideas on what they want.  We do not recommend any particular methods, treatments or strategies.  

Thank you to the SOFT member who agreed to share her experiences of writing a birth plan - it may provide you with some ideas about things you might want to consider.

Making a birth plan after diagnosis

After our baby was diagnosed with Edwards Syndrome (trisomy 18) at 21 weeks, we struggled to find information to help us to put together a birth plan, so I thought it might be helpful to other families if I wrote something about the information which eventually went into ours and how it came to be there.

Like pretty much everyone else who finds themselves in this position, we’d never heard of Edwards Syndrome before the 12 week blood test showed our son might have the condition. The internet led us to pages full of horror stories and heartbreak, before we eventually found SOFT UK, who provided copies of their brilliant handbooks which helped us to understand the condition much better and put us in touch with a parent mentor, who we could talk to about our feelings. This was really important, because the hospital staff had very limited experience of babies with Edwards Syndrome and weren’t able to give us more than the most basic (and pessimistic) information.

Our son was one of the luckier Edwards babies, because apart from his little clenched fingers, he showed no visible signs of damage or deformity. We knew that there was a risk we could lose him at any moment, but tried to put that out of our minds and focus on his chances of making it. We were determined to do everything possible to help him, so started planning for his birth.

Our midwife told us that we’d need an appointment to agree a birth plan, so to prepare I started searching online for examples of plans for Edwards babies, or babies with critical illnesses. I could only find American ones and I wasn’t sure how relevant some of the practices and medicines they mentioned were, so kept looking. I downloaded the NHS birth plan but this focused almost completely on the mothers experience (e.g. who will come into the delivery room, what pain relief do you want, do you want to use a birthing ball, etc.) while I was only interested in making sure that my little boy would be born alive and as well as possible. We filled that in anyway and passed it onto our midwife to be included in the birth plan.

Our Paediatrician offered to find out if we could be referred prenatally to the local Palliative Support Team and this turned out to be a real turning point. Two members of the team visited us at home about a fortnight later and we discussed our son’s condition and our wishes.

Our Birth Plan

Our personal wishes were that all reasonable efforts be made to help him survive and that he come home with us if possible.

The Palliative Support Team then wrote up a care plan outlining the types of care he would be most likely to need in the days following his birth:

  • Ten minutes of basic resuscitation if he was not breathing, or was breathing irregularly, at birth. The same if he had a prolonged apnoea attack while on the ward. They explained that Edwards babies don’t seem to do well on ventilators, so we did not include intubation and ventilation as options.
  • Transfer to the Special Care Baby Unit if he was very small, or had been resuscitated and stabilised.
  • Additional oxygen if his breathing was irregular.
  • Feeding with a Haberman bottle, if we found breast-feeding wasn’t working, or through an NG tube, if the bottle feeds failed.
  • IV fluids, if his blood sugar had dropped very low because of feeding problems.
  • They explained that his breathing may appear to us to be gasping, although it probably wouldn’t be uncomfortable for him, but a tiny dose of a medicine called Oramorph could be prescribed if there was any concern that he was suffering.

The plan also included information on our wishes if he were to die during labour, or if it became clear that he had no hope of surviving. (Essentially for them to give our son to us and leave us in peace.)

The plan also included contact numbers for the Palliative Support Team, who would be our first contact once we home and a general introduction to some of the other professionals we could expect to work with.

Copies of this document were sent to us, the Paediatrician who had made the referral, the local Ambulance Service and family medical professionals.

The Palliative Support Team also made a referral to our nearest hospice and we were able to visit and register with them while I was still pregnant.

A cover page was attached to the care plan by our Midwife confirming the details of my labour choices; foetal monitoring, epidural, emergency caesarian if necessary.

Further Information

During the weekend before my 39 week check up, I noticed movements had slowed down. I was reassured about this but a few days after my forty week checkup the Doppler, EFT monitor and finally a sonograph all confirmed that there was no heartbeat.

My placenta was analysed,which showed that the tubes taking blood into my placenta were very narrow, with something called “intervillous fibrin deposition” and “syncytial knots”. The consultant who gave me the results explained that this would have been developing over the course of my pregnancy, so that by the end there wasn’t enough blood entering my placenta to support the baby. He said that a healthy baby may have been strong enough to cope with the reduced oxygen level, but a baby with T18 who is “already compromised”, isn’t.

I have since found some additional information which I think could have made a difference and helped us to have some time with our little boy, so that this is something which may be worth discussing with your Midwife / Obstetrician. It could affect the decisions you reach about baby’s delivery date, what changes should worry you and what will happen if there seems to be a problem.

The first was a website which gave me a much better understanding of what ‘normal’ movements should have felt like. Reading this I realised, like many mums of babies with T18, that I had felt nothing like the number of movements I should have been feeling during the last few weeks of my pregnancy. Its difficult to know if there is a problem, but a slowing down of your baby’s movements might indicate something is wrong so if you think there is a problem don’t wait to ask for help. Information on this can be found on Count the Kicks website. 

The second was finding out on the American Trisomy 18 site that sometimes labour doesn’t trigger naturally in Edwards Syndrome pregnancies, because the placenta doesn’t send the signal that’s needed. In these cases, the placenta can also stop working properly during the later weeks of the pregnancy, so it doesn’t provide all the oxygen and nutrients which the baby needs to survive. Although many babies are born early, or on the due date, the risk still needs to be considered. 

In Honour of our Son

Although we never got the chance to put our birth plan into action, I hope it could still be useful to other families who decide to go ahead with their pregnancies. Our plan was written to reflect our son’s condition and his particular needs, so your baby may need quite different post-natal care. Hopefully the information in here might give you some ideas about things you can discuss with your maternity team to give your precious little one the best chance of surviving and coming home with you

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