Being Mum (Up until the school years)

In the Year 2000 Joe and Jenny decided that they would try to have children. They knew they had a 50/50 chance for each pregnancy, of passing on the syndrome. They talked about the risk beforehand a lot and decided that the blessings of having children far outweighed the negatives of the syndrome. The decision made was that they would try for two children. Jenny went off the pill and became pregnant a month later. Devastatingly she lost this baby at 12 weeks. The tests on the baby girl came back as inconclusive but it was classed as a blighted ovum.

Three months later Jenny fell pregnant with Melissa. She thought she was going to lose her at 6 weeks but Melissa hung on. Jenny went for 3D scans and in the beginning the doctor thought the baby may have had Down syndrome as she had thickening of the back of her neck. Overtime this was rejected. The 3D scans were inconclusive for craniosynostosis and Crouzons, but the doctor thought there was a good chance that she did have the syndrome. Melissa was born breech at 39 weeks by caesarean and the pediatrician examined her and said that yes she did. His exact words were, 'She's just like her mother'. Jenny was disappointed but ecstatic to have a beautiful baby girl.

Melissa did not look as if she had Crouzons and a few people questioned the diagnosis. But over time it became evident.

The birth of Melissa necessitated Jenny having to tell people about Crouzon syndrome which she found difficult to do, but easier with time. She also found it difficult to admit to the fact that she had passed on the syndrome. Melissa was a difficult baby who did not feed or sleep well and Jenny found motherhood far from easy, and suffered some post-natal depression. She went back to work when Melissa was 3 months old as they had decided that Joe would be the stay-at-home Dad. Jenny enjoyed being back at work for about a week. After that she did not and felt that she missed out on many of Melissa's 'firsts'. She also feels that she didn't bond as much with Melissa as she would have if she'd been home. But any mother who has to go back to work when their baby is young knows this feeling.

Melissa had many appointments with the specialists from the hospital. The plastic surgeon questioned the title of Crouzon syndrome as she had problems with her toes. See the photo of them below. He said that toes do not go with Crouzons and that maybe Jenny and Melissa had a syndrome called Pfeiffers. But at that time there was no genetic testing available so they continued on as Crouzons. Jenny had never heard of Pfeiffers Syndrome before so did some research on it and she could see why he would think they were wrongly 'labelled'. ( This conversation with the plastic surgeon actually gave her a bit of an identity crisis - was she or wasn't she this 'label' she had had for over thirty years? In 2002 genetic testing was available and it came back as the gene for Crouzons. The final diagnosis was we had the Crouzon gene but also had additional characteristics.


Even though Melissa was at the hospital a lot and she had undergone her first of many operations to come, Jenny and Joe decided that they would still try for another child. They wanted Melissa to have a brother or sister. So they tried for another baby which Jenny conceived. This baby was a miscarriage at 12 weeks. Testing was inconclusive like the first one. This was really traumatic as Jenny lost the baby a month after her dad passed away and she had felt this baby was a connection to him.

Jenny and Joe then tried again and Jenny became pregnant with Nicholas. First of all the obstetrician thought that Nicholas had Down syndrome because he had thickening of the back his neck. They remembered this with Melissa so opted not to have an amniocentesis but agreed to a blood test. The blood test came back as negative to DS.  At the 19 week scan the obstetrician told Joe and Jenny that he thought that Nick had Crouzons because his eyes were wider apart then normal. They did not have 3D scans. When telling the plastic surgeon this, he told them that widely spaced eyes were not necessarily an indicator. They went into the birth thinking that the baby did have Crouzons.

Generally people around Jenny were happy for her that she was pregnant and supported her. She did receive one comment from a colleague - "I hope the baby doesn't turn out like Melissa.".... which meant 'not have Crouzons'. Jenny found that comment hard to take as Melissa was everything to Jenny and she felt that if she had another Melissa then that would be wonderful. 

Nick was born at 36 weeks. He was breech and was delivered by emergency caesarian after Jenny's waters broke in the middle of the night in a thunderstorm. It was obvious to Jenny straight away that he had Crouzons as he had bulgy eyes. She was disappointed but more concerned about the fact that he hadn't cried. The pediatrician had to give him a massage and oxygen but after a few minutes he was okay - but still he did not cry.

Jenny did not have the guilt feeling with Nick. she just fell in love with him. He did not feed well but that had happened with Melissa so it was not so stressful. Jenny did not have post-natal depression. He was a wonderful baby and she was a very proud mum. Jenny stayed home with him for 8 months which she really enjoyed and it allowed her time to bond with both Melissa and Nick.

Being a Mother - Jenny's Reflections from 2007:

Jenny didn't think she would ever be a mother. She thought having Crouzons meant that she shouldn't be a mother. And Jenny is sure that there are people who think she shouldn't have had the children. There are people who think that it is not fair to bring children into the world knowing that there is a strong possibility that they will be born different and will need surgeries to correct their condition. But Jenny's philosophy is that there are no guarantees in life. There are many things that children can be born with, many of these are far worse then Crouzon syndrome.

On the negative side, as the mother and father of children with Crouzons it has meant lots of trips to the hospital and to doctors, and it has caused stress on Joe and Jenny's relationship and finances. For the children it has meant doctors, operations, pain, and unfortunately teasing.

But there have been many more positives which have out wayed these negatives. Joe and Jenny have become a team. Without a lot of outside help they have needed to pull together. Crouzon syndrome can equal success. Jenny has achieved a lot in her life and will continue to. Her hopes are that her children will do the same.

Jenny sees the beauty in her children. They have fantastic personalities and they bring such joy to everyone they meet. They are Her treasures from heaven. Her blessings.

Jenny is very protective of her children. As their mother she will be trying throughout their lives to protect them from the hurtful things in life. She will be there to pick up the pieces when name calling gets through their protective armour. She will be there to listen. She will there to show direction. She will be there to love.

The simple things in life mean the most to Jenny: the softness of Nick's hair on her chin; the sweetness of Melissa's first song that she sang at age 3 - speech has been difficult for her; Nick's giggle as he plays with Melissa; that word 'Mum'; kissing my children goodnight; my children's smiles. They are all wrapped up and placed in the treasure box in Jenny's heart.

Jenny admits that she does not see her children as others see them. People stare at Melissa and Nick. Melissa notices this. When she was smaller she would sometimes hide her head in public but now she doesn't. 'We've had to talk to her about her 'small bones in her face'. This has helped her to explain her face to those children who have asked her. She even now stands up for Nick when other children make comments about his face.

Jenny and Joe will never stop taking their children out and they know that people are not going to stop staring. People look at anybody who is different, it is a fact of life. But Jenny knows from her childhood that when you at stared at constantly it is hard to deal with.

Jenny has come to terms with the three of them having Crouzons and her faith in God has been instrumental in this.