Max, SGA
- The Netherlands
Don’t have any doubts about taking growth hormone. It’s very simple. You just take it, and your child will grow. If you have the chance, do it!
In the words of Mike & Naomi, Max's parents
We had problems having children from the start. Our first child was born very small – 430 grams – and died shortly after birth. Then we had our daughter Rivka. She was born 8 weeks premature and weighed 1000 grams, which is just about the minimum weight to be considered normal. Then 4 years later, we had Max. He was also born 8 weeks premature and was also very small – just 670 grams.
Back when my (Naomi) mother was pregnant with me, she had taken a hormone called DES, which was given to some pregnant women in the 60’s and 70’s to prevent miscarriage. It was later discovered that DES hormone didn’t work and that it caused problems for the daughters of the women who used it – specifically problems having children of their own. So we knew we might have a hard time bearing children.
Max was so small at birth that he had to stay in the hospital in Rotterdam for 9 weeks. After we brought him home from the hospital, the neonatologists there continued to monitor him closely. They measured his weight and length, and they could see that he wasn’t catching up. They told us that 85% of children who are born too small catch up within a year and a half, and that’s what had happened with our daughter Rivka. She caught up and reached a normal size by the time she was 1 year old. So we thought Max would catch up too, but he just wasn’t growing fast enough, and they didn’t know why.
Max had other problems too, mostly as a result of being born premature. He didn’t eat much in the beginning, and he would throw up sometimes. And when he wouldn’t eat enough, he would get sick and then when he was sick he wouldn’t want to eat. So it was vicious cycle. He also had a lot of energy – to the point of being hyperactive – which seems to be typical in these cases. And he had some trouble with his eyes and ears. Also in the beginning, he wasn’t producing enough blood, adding to his growth retardation. Finally, he also had some problems with his motor functions, so certain physical movements like putting his hands down to break his fall or kicking his legs to swim were difficult.
When Max was old enough, we switched from the hospital in Rotterdam to a paediatric specialist at a local hospital closer to where we live. That way it would be more convenient for us to have Max’s growth monitored.
We still didn’t know anything about growth hormone treatment as an option, and the first doctor we had here at our local hospital wasn’t in favour or using hormones. He told us that Max’s growth was natural and that we shouldn’t be concerned about whether he’s 150 cm (5’) or 180 cm (5’ 10”), but rather just be happy that he’s alive and not dead! So he never referred us to see an endocrinologist.
Then, after a while, we were lucky to get a different paediatrician at our local hospital, who was excellent. He had studied with some of the endocrinology specialists at the hospital in Rotterdam. He knew about growth hormone treatment, and he told us all about it – that it was safe, and that if Max needed it, he would make sure we got it. So after a year and a half, when he could see that Max wasn’t going to catch up without treatment, he referred us to the endocrinology specialists in Rotterdam. Max was 3 years old.
When we went to see the specialists in Rotterdam, it was at the same hospital where Max and Rivka were born, so the doctors there already had all our medical records, and they knew our family’s background.
They took X-rays of Max’s bones and they took blood from Max and the rest of us to do a genetic analysis. They also did a growth hormone profile test where they measured Max’s growth hormone production during the day.
But they didn’t find any genetic defect, and Max had normal levels of growth hormone in his blood. They said his body was producing enough growth hormone to grow slowly, but not enough to grow faster. They plotted his growth on a growth chart, and we could see that he was following his own curve, but it was much lower than the normal curve.
After 2 months, the specialists concluded their diagnosis, and told us that Max was eligible for growth hormone treatment. But it was up to us to decide whether or not we wanted Max to take the injections.
The doctors told us that without treatment, Max would only grow to be 150 cm (5’) . We’re both pretty tall – 172 and 182 cm (5’ 7” and 6’) – and we expect our children to be at least as tall as we are, so when they told us Max would only reach 150 cm (5’), it was quite a shock. But they told us that growth hormone injections were completely safe and that they would make Max grow faster and reach his full potential height.
We had some hesitation about taking hormones, considering our family’s past experience with DES hormone, so we had a lot of questions. But we couldn’t find any information other than what the doctors told us. The decision was a bit difficult. As adults, when we take hormones, it’s our choice. But we had to make a decision for a three-year-old, and we felt like we couldn’t know what the consequences might be 20 years later.
Ultimately, we had to balance our apprehension about possible side effects with our desire for Max to be normal. On the one hand, we thought if we didn’t have the treatment, Max would be 150 cm (5’), and there would be certain things he couldn’t do in life, but there would be no risk of complications from taking hormones. And on the other hand, we asked ourselves what it would be like if Max were 24 years old and wanted to be a pilot but was too short, and what we would say to him if he then found out that there had been a treatment available and that we had decided not to give it to him.
We discussed it amongst ourselves and we also talked to another family in our town whose child was being treated with growth hormone. They had been very satisfied with the treatment, so that was helpful. In the end, we knew Max needed the treatment, and we wanted him to be as tall as he could, so of course we decided to give it to him.
When it was time to start the injections, we all went to the hospital, and they showed us how to do it. First we practiced on an orange, then on each other, and then we injected Max.
Max hated the injections in the beginning. He put up a real fight – kicking and screaming – and we’d have to hold him down by his arms and legs just to get it done. As parents, it can be hard to have to do something to your child that makes him so upset. But we knew it was for his own good, so we had to do it.
It actually took a year or 2 before Max got used to the injections. Eventually, he realized that he needs it, and he could see and feel that he was growing. Now if we’re busy or we forget it, he’s the one who comes and says “Momma, momma, I need my injection.” He understands that he has to have it everyday, so he’ll actually ask for it.
Max was 3 years old when he started growth hormone treatment, but his response to the treatment was quite slow in the beginning. About a year and a half went by before we really started to see the results. At first we just noticed that he was outgrowing his clothes faster than he used to.
Then when he got to be 6 or 7 years old, he started to grow much faster and began to catch up to the other boys his age. He’s 125 cm (4’ 1”) tall now, which is right at the lower end of the normal range.
His weight has improved on treatment as well, though it still goes up and down. Usually when we go in for check-ups, it’s his height that’s improved half of the time and his weight the other half. In the early days, he doctors advised us to just give him whatever he likes in small pieces throughout the day – even if that meant chocolate and fast food all the time – just so he could put on some weight. Max is still thin in general, but he eats very well now, even more than his sister who’s 12 years old.
Most of the other problems Max had when he was younger have improved as well. He had a little operation for his ears about a year ago, and since then his hearing has been better. And he wears glasses for his vision, but he likes the glasses. He had a few blood transfusions when he was a newborn, but that stopped being a problem when he was 1 year old. Finally, he had some physiotherapy when he was younger, so he doesn’t have any trouble with his motor functions anymore.
Nowadays, Max is a very active boy. During the week, he plays football and basketball and hockey at school. Twice a week, he goes to horseback riding lessons and also to a painting and drawing class. And in his spare time, he likes to play with his friends in the neighbourhood, or read books. He still has a lot of energy, but it’s never interfered with his activities or his performance at school.
Max is very intelligent. He reads a lot, and his vocabulary is more developed than the other children. When he speaks, he uses sentences like you’d find in a book. He’s also highly inquisitive. He wants to know about everything, and he’s passionate about learning. He likes his schoolwork -- especially reading, writing, and maths -- and he wants to do well; he doesn’t like it when the other children make a ruckus in class. His teacher told us she wished she had a whole class of Maxes! We’ve been quite lucky, because children born premature often have lots of problems in school. But Max is very bright.
Max is quite charming as well. We have only female doctors and nurses at the hospital, and he likes to flirt with them and ask them out on dates. He’s a bit of a Casanova. At horseback riding class, he has only girlfriends, and they love to dote on him. They bring him lemonade or chocolate – they do everything for him.
And he’s a sweet kid. He has a special horse named Baukia who he likes to take care of – he brushes her mane, cleans her feet, and rubs her neck, so she’s nice. And he brings her little treats to eat. He loves animals, and we have many in our home.
There’s something special about Max’s personality. If he likes you, then he’s very open, and he’s your friend. When we were in Tunisia, he would play football with the local kids. They couldn’t speak Dutch, and he couldn’t speak Arabic, but he didn’t have any problems. He has a certain way with people. He’s able to assert himself and get people to do what he wants. The other day, we were in a nearby town at a reception with the Mayor, and we lost sight of Max for a few minutes. Then we spotted him, standing beside the Mayor having a chat. And that’s Max!
On the other hand, if he doesn’t like you, then he’s very shy and says nothing. So he’s good with people, but not with everyone. And he doesn’t like big crowds. He can be very reticent in a room with lots of people or lots of noise. We think this is the result of being so small for so many years – it’s easier for him to feel overwhelmed.
Our doctors have been very pleased with the results of growth hormone treatment, and so have we. All in all, it’s gone extremely well. At the rate he’s going now, we expect Max will reach 179 – 185 cm (5’ 10” – 6’ 1”) by the time he stops growing at around age 16. So we’re very happy we decided to give him the treatment.
Of course, we still have some worries about the future. Because of our family’s experience with DES hormone in the past, there’s still a part of us that wonders if Max may have problems having children, like we did, or if they may discover something about growth hormone that they don’t know today.
But we’ve never had any problems with the treatment. We’re used to it now. The only thing that can be frustrating is that we can’t always be impulsive. We have to think ahead and make sure we’ve got the medication and enough needles and that there’ll be somebody to give the injection and some place to keep it cool. That’s the only problem we encounter. But as adults, we also take medication ourselves, and we have to consider the same issues, so it’s normal. It’s not a big deal.
We think it’s very important to have a certain height in society. It’s not that you can’t live if you’re small, but it makes life more difficult. When you go to the store or ride on the train, things are too high to reach. Or if you want to drive a car, things are too big – too spread out. And if you want to play sports, it’s too hard to compete with the others.
And later on, there are other issues. When it’s time to find a girlfriend or a wife, you’ll have fewer options if you’re 150 cm (5’). And being small can affect you professionally as well. If there are 10 applicants for a job who all have comparable educational backgrounds and experience, and if 1 of the applicants is 150 cm (5’) and the rest are 180 cm (5’ 10”), the employer is going to prefer to choose someone with normal height, even though it’s illegal to discriminate on the basis of height. People may not even be conscious of it when they do it.
The best thing about growth hormone treatment has been watching Max catch up to the other boys his age, so that he can take part in all the same things they’re doing. It was hard for Max and for all of us when he was younger, because he was so small. He wanted to play football with the other children, but they would say to him “No, you’re too small, you can’t play with us.” That was a real problem.
And too many things were just too big for him. He wanted to ride a bicycle like all his friends, but all the bikes were too big. It was the same problem with roller blades. And when he started kindergarten, the chairs were too high, so his feet couldn’t reach the ground. But thanks to the growth hormone, he grew quite quickly, and within about a year, he could ride the smallest bikes, and now he can fit into the roller blades and the chairs at school. Nothing holds him back anymore.
We recommend growth hormone treatment – 100% -- to families that have the chance to take it. We’ve seen the results, and they’re very, very good! Parents shouldn’t have any doubts about taking the treatment. It’s very simple. You just take it, and your child will grow!
