When the Pregnancy Continues
Continuing with the pregnancy of a baby with trisomy 13 or 18 means one of several outcomes:
- There is an increased risk of premature labour
- The baby may be miscarried, stillborn, or die shortly after birth.
- The baby may be cared for in hospital or at home and die in infancy.
- Although survival into childhood is rare, you could be faced with caring for a child with severe developmental delay, or you mayconsider shared care, fostering, or adoption.
Since you do not know how long your child will live, the pregnancy is aprecious time to get to know your baby. You need positive support from the medical and midwifery staff, preferably the same obstetrician and midwivesto avoid the need for constant explanations each time you are examined.Once you have accepted the loss of your expected child and your dreams for their future, you can prepare to welcome a very special baby and willwant to discuss possible problems and outcomes with the paediatrician. If you have other children you need to explain the baby will be poorly andmay not be able to come home.
‘It was too hard to think about her death and concentrate on loving her atthe same time. Gordon was wise and said that while she was with us hewanted to enjoy her company. Those words transformed the pregnancy forme. We enjoyed everything and everywhere more knowing she was with us, and took photographs of my pregnant shape.’
‘We are much relieved since we actually made our decision to continuethe pregnancy and we hope the next few weeks will be uneventful. Thenext months will not be easy for us but it has helped considerably to talk toother people who have been through this situation before.’
‘We told everybody we knew about Joshua and had the prayer support ofnumerous people. I was praying most of all that Joshua would be born aliveand we’d all have long enough to get to know him. I actually quite enjoyed my pregnancy. We decorated a room for Joshua and bought acouple of outfits for him. Our young son prayed Joshua would be well enough to come and live with us, even if it was just for a short time.’
‘Having got a definite diagnosis, we spent the rest of the pregnancy preparing ourselves, our daughter, and the rest of the family for a handicapped baby that would either be stillborn or die shortly after birth.’
‘I talked many times to the SOFT befriender who had also had a prenatal diagnosis some years earlier and knew how I was feeling. She encouraged us to focus on both of the twins, and this advice was both helpful and practical in the weeks leading up to the birth as it was easy to fall into the trap of considering the needs of only one baby.’
‘Our son was diagnosed as having trisomy 18 after abnormalities showed upon a 20 week scan. We decided to continue the pregnancy and eventhough we face a time of anguish and joy ahead, I am so delighted to stillhave him here with me. He is quite active and kicks me, especially when Iam travelling to work by train which I find very reassuring.’
HELP DURING PREGNANCY
Other people can help during pregnancy by making contact, writing,visiting, and generally being supportive. It is less of a worry to have others to spread the news and do all the explaining. It is not helpful when people do not accept the gravity of the situation and try to say everything will be allright.
‘I was grateful for people who asked useful questions and acknowledgedour baby in what they said or wrote or prayed. They took photos of thepregnant me and gave them to us after her death, and it was important tome that they allowed me to be with their children.’
Your birth plan should take account of decisions that may need to bemade quickly, such as an emergency Caesarian section for fetal distress. Doctors no longer assume the long term prognosis justifies non-intervention,and some parents will want to do all they can to enhance whatever chance the baby has of even limited length and quality of life. This can include opting for a Caesarian, or letting nature take its course.
‘I was told Trisomy 13 babies never lived and I would probably need a Caesarian section which would then have implications for future pregnancies. We met with the paediatrician who gave us some details about Patau’s syndrome and also discussed with us what medical intervention we would want. We agreed to keep the birth as natural as possible and do nothing to artificially prolong his life. When he was born, 4 weeks early and breech, I can honestly say I was delighted with him. I am so pleased that we’d known what he would be like before he was bornand it was really exciting to see him moving and hear his tiny cry. Joshua lived for four months and for much of that time needed no special nursing care. We are really pleased we gave him the chance of life.’
‘Heather arrived safely after a planned Caesarean birth. She was kept inspecial care for a few days to improve oxygen levels in her lungs which had been full of fluid, and was then able to come home.’
‘Anna was a breech vaginal delivery and needed no resuscitation apartfrom oxygen. She was looked after in a Special Care Baby Unit but needed no special care apart from being tube fed.’
‘There were times I was angry with her for having ousted our normal baby,and for keeping us back from starting a ‘proper’ family. I was most angry when much nearer term a further scan showed her likelihood of survival was minute but she was breech and the question of a caesarean section arose.I knew putting her first meant having a section but I was angry at the futility of it. How much was I to sacrifice for her to die anyway? What if the section made other deliveries hazardous? This was the time when it was hardest tolove her. We opted for the section and I saw a paediatrician who spoke with real concern for the baby, and I realised that although the consultant and midwives had been very caring towards us they had never expressed concern for the baby. The paediatrician said things might not be as bad as they seemed and she gave me the hope I needed to love my baby.
Jennifer Grace was born by Caesarean section under spinal anaesthetic. As a bonus she was beautiful. We had prayed that she would be peaceful and comfortable and she was. Her lungs were too fragile to be ventilated for long and we were given her to hold for her last fifteen minutes. She had lived for 5 hours.’ .
WHAT WILL MY BABY LOOK LIKE?
Many newborn babies with trisomy 13 or 18 look like any other new infant to their parents, but it is common for babies to have a light birth weight, slightly lower than normal ears, clenched fists, unusual palm and fingertip patterns,and slower or absent reflexes. Some babies have other noticeable problems associated with these conditions such as a cleft lip, club foot, defects of the abdomen or eyes,and detailed ultrasound scans may detect these and allow parents to be prepared and make provisional plans with the paediatrician before the birth.
WHEN A BABY IS STILLBORN OR DIES SHORTLY AFTER BIRTH
(see also Memories)
Babies with a severe chromosome abnormality may suffer from major medical problems and be stillborn or die shortly after birth. After delivery some babies can need resuscitation and oxygen before being able to breathe unaided, and the nature of this should be discussed beforehand. Parents may decide strenuous resuscitation is not appropriate.
'We look back on the pregnancy as a special time because she was with us.We miss her as a much loved member of our family. She had a funeral to celebrate her life, and if we have other children we can tell them about their older sister. All these things help us to come to terms with our loss.'
'Even though Amy had died before she was born, she is precious and still animportant part of our family. The fact that we were given time to be withher and hold her, has always been vital in enabling us to think of her as areal person.'
''Each year we mark her birthday, and by talking about her in our daily liveswe are keeping her memory alive. She is too important to be forgotten.'
A BABY NEEDING INTENSIVE CARE
Some babies require the facilities of the Special Care Baby Unit only until breathing and feeding are establishedand these babies are then transferred to a 'baby ward', and may be able to go home when hospital nursing is not required. Where there are major life threatening problems and the future of the baby seems hopeless, it may not be right to provide the highest level of life saving skills, but the decision not to give intensive care to prolong the life of a very sick baby does not mean that loving care is withdrawn. The child can be kept comfortable and peaceful with much of the nursing care being provided by the parent or parents and supported by the medical staff.
'The SCBU were marvelous letting me hold her and spend as much time with her as I wanted. Katie died when she was three days old.'
'The doctors recommended doing no surgery or heroics and we agreed with them at that time.'
'While I was sleeping at night, John would sit in special care talking to Christopher about the world outside, of the things they could have done together, singing to him continually keeping up a hum of words. It was as if he was trying to cram Christopher's whole life into four days.'
CARING FOR A BABY WITH SPECIAL NEEDS AT HOME
Parents may have the option of taking a baby home when hospital care isnot required. Specialised support should be arranged together with a structured care plan to prepare a family for problems that may arise, and the care plan must be flexible to the changing needs of the baby or the family.
‘Always feel that you can ask for information or advice - as many questions and as often as you need. Ask the people you trust and who can give you the information you need.’
Dr Una MacFadyen Paediatric Consultant
Dr Una MacFadyen Paediatric Consultant
‘Half way through my pregnancy we knew Suzannah had trisomy 13. She was born normally with lots of lovely red hair and weighed 6lb 11oz. We cuddled her for a few hours before she was taken to the Special Care Baby Unit. She couldn’t feed because of her cleft lip and palate and a drip was setup. The difficult question of surgery arose because Suzannah had a bowel obstruction and surgery would be required to correct it. When we considered her other medical problems we felt that this high risk surgery would not be appropriate for Suzannah. We were then able to choose to care for her at home. We had Suzannah for 16 days and we made that time extra special.'
’Feeding problems can cause slow growth and low weight gain because babies lack the co-ordination to suck and swallow properly. Mothers who want to breast feed can express their milk, and Haberman Feeders are designed for babies with feeding difficulties by concentrating the baby’s sucking effort directly on to the milk in the teat so that the weakest suck gets results and air swallowing is reduced. Babies often need tube feeding, and families can learn to do this at home. To give parents a rest, a special overnight feeding ‘pump’ can allow the baby to feed through the night.
‘Cian never cried for his feed. In fact we had to keep a close watch andwake him when a feed was due. He was successfully tube fed with my expressed breast milk during his short life of five and half weeks.’Some babies have apnea (breath holding spells) and parents may consider the use of breathing monitors, and learning simple resuscitation. Families taking a baby home should be informed about Special Care Baby Unit staff home visits, Community Paediatric nurses, physiotherapy, respite and shared care, and state allowances.‘Anna died suddenly when she was 16 days old. There was no obvious warning. She had apnea during a feed and couldn’t be revived. The suddenness of her death was a shock to everyone even though we knew she could die at any time.’