Being a Mother with Crouzon Syndrome

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In the Year 2000 Joe and I decided that we would try to have children. We knew that I had a 50/50 chance for each pregnancy, of passing on the syndrome. We talked about it beforehand a lot and decided that the blessings of having children far outweighed the negatives of the syndrome. So we made the decision that we would go ahead and try for two children. I went off the pill and became pregnant a month later. Devastatingly I lost this baby at 12 weeks. The tests on the baby girl came back as inconclusive.

Three months later I fell pregnant with Melissa. I thought I was going to lose her at 6 weeks but did not. I went for 3D scans and in the beginning the doctor thought she may have had Downs 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. Melissa was born breech at 39 weeks by caesarian and the pediatrician examined her and said that yes she did. I was disappointed but ecstatic to have a beautiful baby girl.

Melissa did not look as if she had Crouzons. I had a few people question as to whether she did but over time it became evident that yes she did.

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

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 we had a syndrome called Pfeiffers, but at that time there was no genetic testing available so we continued on as Crouzons. I had never heard of Pfeiffers Syndrome before so did some research on it and I see why he would think we were wrongly 'labelled'. (http://www.faces-cranio.org/Disord/Pfeiffer.htm). In 2002 the genetic testing came back as the gene for Crouzons. This result meant that basically are not typical and have additional characteristics which are not common to Crouzons.

Nicholas:

Even though Melissa was at the hospital a lot and she had undergone her first of many operations to come, we decided that we would still try for another child. We wanted Melissa to have a brother or sister. So we tried for another baby which I conceived, but I miscarried him at 12 weeks as well. Testing was inconclusive like the first one. This was really traumatic as I lost the baby a month after I lost my father.

We then tried again and I became pregnant with Nicholas. First of all the obstetrician thought that Nicholas had Downs Syndrome because he had thickening of the back his neck. We remembered that we were told the same thing with Melissa so opted not to have an amniocentesis but I agreed to a blood test. The blood test came back as negative. Then at the 19 week scan the obstetrician told us that he thought that Nick had Crouzons because his eyes were wider apart then normal. We did not have 3D scans. The plastic surgeon said that widely spaced eyes were not necessarily an indicator. We went into the birth thinking that the baby did have Crouzons.

Generally people around me were happy for me that I was pregnant and supported me. I did have one comment though made to me - "I hope the baby doesn't turn out like Melissa.".... which meant 'not have Crouzons'. I found that comment hard to take as Melissa to me is everything and I felt that if I had another Melissa then that would be wonderful. I guess this person saw things differently.

Nick was born at 36 weeks. He was breech and was delivered by emergency caesarian after my waters broke in the middle of the night in a thunderstorm. It was obvious to me straight away that he had Crouzons as he had bulgy eyes. I was disappointed but I was more concerned about the fact that he hadn't cried. The pediatrician had to give him a massage and oxygen but he was fine after a couple of minutes.

I did not have the guilt feeling with Nick. I just fell in love with him. He did not feed well but that had happened with Melissa so it was not so stressful. I did not have post-natal stress. He was a wonderful baby and I was a very proud mum. I stayed home with him for 8 months which I really enjoyed and it allowed me to bond with both Melissa and Nick. This time was precious for Melissa and I as well and I now have a much closer relationship with her which I know will be necessary for the years to come.

Being a Mother:

I didn't think I would ever be a mother. I thought having Crouzons meant that I shouldn't be a mother. And I am sure that there are people out there who think that I shouldn't have had my 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 my 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 means lots of trips to the hospital and to doctors, and it means stress on your relationship and finances. For the children it means doctors, operations, pain, and unfortunately teasing.

But there are many more positives which outway these negatives. My husband and I are very close and strong because of what we have been through. We have been through more in the last 5 years then many people go through in a lifetime. Crouzon Syndrome can equal success. I have achieved a lot in my life and will continue to. My hopes are that my children will do the same.

My children are beautiful both inside and out. My children are the best and I would not swap them for any other. They have fantastic personalitieis and they bring such joy to everyone they meet. They are my treasures from heaven. My blessings.

Yes I am very protective of them and I will be. As their mother I will be trying throughout their lives to protect them from the hurtful things in life. I will be there to pick up the pieces when name calling gets through their protective armour. I will be there to listen. I will there to show direction. I will be there to love.

The simple things in life mean the most to me: the softness of Nick's hair on my 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 my heart.

I must admit though that I do not see my 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 have 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.

We will never stop taking our children out and people are not going to stop staring. People look at anybody who is different, it is a fact of life. But when you at stared at constantly it is hard to deal with.

I have come to terms with the three of us having Crouzons. In the past couple of years I have turned back towards God. He helped me through so much when I was a teenager and I know that he will help me through all the years ahead.

Faith in God:

I know that God has made the three of us the way we are. He made me before he put me in my mother and he had made Melissa and Nick before they were in me. I know that God has a plan that is for good, for me and my two beautiful children. Even though our lives involve doctors, hospitals, operations and pain....my God is in control and he will use our lives for His purposes.

Right to Have Children:

Please remember if you are in my situation, you have the right to have children. It will not be easy but there are many things in life that are not easy. I have found that God gives you what you can cope with. If you have children with Crouzons then you will find inner strength to cope and the ability to deal with society's biases and ignorance.