| Birthcare and After Birth Plan |
| I understand that my son suffers from a rare genetic condition and that his prognosis for sustaining life and quality of life are extremely poor. I understand the nature and implication of Edward’s Syndrome and that less than 5% of children with the condition make it past birth. However, in the event that my son is one of that 5% I wish to do what ever is reasonable to enable him to have the chance to live, for whatever period of time. In the event that this is not possible, I would like to make the time I have with him, whether alive or not, as special as possible. |
| Caesarian Section |
| If Connor is still with us at the time recommended for delivery, I would like to have a caesarian section. I understand that this is a serious medical procedure and that it may have implications both for my health and for future pregnancies. However, I have decided that this is what I would like to do. I understand that labour and birth can be very traumatic for babies with Edwards Syndrome. I understand they have difficulty helping themselves during labour. I also understand it may put him in distress, with regard both to breathing and to cardiac ability. I know statistically that many Edwards babies are lost during labour as a result of this. Therefore a caesarian section would be my preferred method of delivery |
| Post Delivery |
| If Connor is delivered alive, I would like to hold him for a short period, if this is at all possible. I understand he will probably be removed to go to special care. I would appreciate being kept updated on what is happening. I want to be with Connor, as soon as is medically possible. In the meantime I would appreciate it if a member of my family could be with him, such as my mother, father or sister. I would also appreciate if we could have him christened, or blessed in hospital. I wish to be with Connor and to hold him at the time of his death |
| Resuscitation and Assistance |
| If Connor is born alive and requires resuscitation, I would request that this be carried out. My immediate aim at this stage is to stabilize his condition of this is possible, to enable us to ascertain the severity of his complications. With regard to further treatment, I would be guided by the medical staff as to reasonable actions, based upon the assessment of his medical condition. With regards to the use of a ventilator, if this is deemed to be a stabilizing procedure only I would consent. However I would decline use of “life support” in the circumstances where the baby is clearly unable to survive unassisted and the ventilator is merely providing life |
| Feeding |
| With regard to feeding, in view of the perceived difficulties with Connors cleft lip and probably palate also, I would consent to the use of a tube to feed, where the doctors feel this would be in the best interests of the baby. The primary concern is to establish nutrition as Connor is likely to be underweight. I would however like to be able to express milk for the feeding if this is possible. Feeding past the newborn stage I will take guidance on from the medical staff once Connors condition has been assessed. |
| Further intervention |
| Although Connor has T18, he is also an individual and it is therefore his right, I feel, to be treated as an individual case with specific problems. If he has problems which it is possible and reasonable to rectify to improve his quality of life, I would wish these to be investigated. In accordance with my wishes to give Connor the best possible chance at life, I wish to afford him the right to be fully assessed before any decisions are made. I will consent to whatever tests the medical staff deem necessary and appropriate in assessment of Connor’s condition. I wish to be informed of all problems and situations as they arise and in a timely manner. I wish to have the full implications of problems explained to me, both good and bad, and in such a way that I understand. I wish to be fully involved in all decision making. I am aware that some babies with Edwards syndrome suffer from problems which require immediate surgery. Such as the stomach not being connected properly to the oesophagus etc. Where such surgery is available to us, I would consider it based upon Connor’s general condition. All my decisions will be made with due thought and process to the implications of the diagnosis of the chromosomal anomaly and in consultation with his physicians. It is not my aim to prolong suffering or to sustain life by artificial means. |
| Leaving Hospital |
| 1.Although I appreciate it is very rare for a baby with Edwards Syndrome to leave hospital in a stable condition, I understand it is possible and would like to be prepared for any eventuality. Some babies affected by the condition have a reasonable quality of life, although significantly different from a “normal” baby. It would be my intention to care for the baby at home, once a stable condition had been established. 2. I understand the situation may also arise where the baby is stabilized, but nothing more can be done to improve the situation and the baby may have several hours or days to live. Where medical intervention is no longer required, it would also be my intention to take the baby home. Obviously I would act on recommendations of the medical staff at all times and would not remove myself or the baby from medical care where it was deemed necessary |
| Stillbirth |
| In the event of Connor passing away in utero, I would like to be induced as soon as possible. I understand that the baby’s condition deteriorates fairly rapidly and I would wish to see him in as good a state as possible. I would appreciate being able to spend time with him afterwards, with my family and also the baby’s father. If possible I would like to bathe him and dress him. I would also like to take handprints and footprints, and a lock of the baby’s hair (if he has any.) I would also like to keep his ID bracelet and any other effects available. I would appreciate having him blessed or whatever ceremony is appropriate, in hospital if this is possible. I would like the baby to be taken to the funeral home either by myself or by a member of my immediate family, if this is not contradictory to hospital regulations. |
| Post Mortems |
| I assume that I will not be required to have a post mortem examination should Connor be stillborn or die shortly after birth, due to his Edwards Syndrome. I do not wish this examination to take place unless it is strictly necessary. |