Why Your Newborn Should Have a Blood Screening Test

Every baby is offered newborn blood spot screening, also known as the heel prick test, ideally when they’re 5 days old.

Newborn blood spot screening involves taking a blood sample to find out if your baby has one of 9 rare but serious health conditions.

Most babies won’t have any of these conditions but, for the few who do, the benefits of screening are enormous.

Early treatment can improve their health, and prevent severe disability or even death.

What does the blood spot test involve?

When your baby is 5 days old, a health professional will prick their heel and collect 4 drops of blood on a special card.

You can ease any distress for your baby by cuddling and feeding them, and making sure they’re warm and comfortable.

Occasionally, the sample may need to be taken when your baby is 6, 7 or 8 days old.

Sometimes a second blood spot sample is needed. The reason for this will be explained to you. It doesn’t necessarily mean there’s something wrong with your baby.

The test doesn’t carry any known risks for your baby.

Which conditions is the blood spot test for?

The blood spot test screens for the following 9 rare but serious conditions.

If you, your partner or a family member already has one of these conditions (or a family history of it), tell your health professional straight away.

Sickle cell disease

About 1 in 2,000 babies born in the UK** has sickle cell disease. This is a serious inherited blood disease.

Sickle cell disease affects haemoglobin, the iron-rich protein in red blood cells that carries oxygen around the body.

Babies who have this condition will need specialist care throughout their lives.

People with sickle cell disease can have attacks of severe pain and get serious, life-threatening infections. They’re usually anaemic because their blood cells have difficulty carrying oxygen.

The blood spot screening test means that babies with sickle cell disease can receive early treatment to help them live healthier lives. This may include vaccinations and antibiotics to prevent serious illnesses.

Pregnant women are also routinely tested for sickle cell disease early in pregnancy.

Read more about sickle cell disease, or download leaflets for parents whose child has sickle cell disease.

Cystic fibrosis

About 1 in 2,500 babies born in the UK** has cystic fibrosis. This inherited condition affects the digestion and lungs.

Babies with cystic fibrosis may not gain weight well and are prone to chest infections.

Babies with the condition can be treated early with a high-energy diet, medicines and physiotherapy.

Although children with cystic fibrosis may still become very ill, early treatment can help them live longer, healthier lives.

Read more about cystic fibrosis, or download a leaflet for parents whose baby has suspected cystic fibrosis.

Congenital hypothyroidism

About 1 in 3,000 babies born in the UK** has congenital hypothyroidism. Babies with congenital hypothyroidism don’t have enough of the hormone thyroxine.

Without thyroxine, babies don’t grow properly and can develop learning disabilities.

Babies who have the condition can be treated early with thyroxine tablets, and this allows them to develop normally.

See more information about congenital hypothyroidism (CHT).

Inherited metabolic diseases

It’s important to let your health professional know if you have a family history of a metabolic disease (a disease that affects your metabolism).

Babies are screened for 6 inherited metabolic diseases. These are:

• phenylketonuria (PKU)
• medium-chain acyl-CoA dehydrogenase deficiency (MCADD)
• maple syrup urine disease (MSUD)
• isovaleric acidaemia (IVA)
• glutaric aciduria type 1 (GA1)
• homocystinuria (pyridoxine unresponsive) (HCU)

About 1 in 10,000 babies born in the UK** has PKU or MCADD. The other conditions are rarer, occurring in 1 in 100,000 to 150,000 babies.

Without treatment, babies with inherited metabolic diseases can become suddenly and seriously ill. The diseases all have different symptoms.

Depending on which one affects your baby, the condition may be life threatening or cause severe developmental problems.

They can all be treated with a carefully managed diet and, in some cases, medicines as well.

Does my baby have to have the blood spot test?

It’s not compulsory, but it’s recommended because it could save your baby’s life.

You can choose to have screening for sickle cell disease, cystic fibrosis or congenital hypothyroidism individually, but you can only choose to have screening for all 6 inherited metabolic diseases or none at all.

If you don’t want your baby to be screened for any of these conditions, discuss it with your midwife.

You should be given information about the blood spot test and the diseases it screens for in advance so you can make an informed decision for your baby.

If you change your mind, babies can be screened up to the age of 12 months for all the conditions except cystic fibrosis. Cystic fibrosis can only be screened for up to 8 weeks of age.

If you have any concerns about the tests, speak to your midwife, health visitor or GP.

When will we get the results?

You should receive the results either by letter or from a health professional by the time your baby is 6 to 8 weeks old.

The results should be recorded in your baby’s personal child health record (red book)(*health records). It’s important to keep this safe and take it with you to all your baby’s appointments.

If you haven’t received your baby’s results, speak to your health visitor or GP(*physician).

You’ll be contacted sooner if your baby screens positive. This means they’re more likely to have one of the conditions tested for.

You’ll be contacted:

• the day the result is available, or the next working day, if your baby is thought to have congenital hypothyroidism (CHT) – you’ll be given an appointment to see a specialist
• before your baby’s 4 weeks old if they’re thought to have cystic fibrosis
• before your baby’s 6 weeks old if they’re thought to have sickle cell disease

Screening for cystic fibrosis finds some babies who may be genetic carriers of the condition. These babies may need further testing.

Screening for sickle cell disease also finds babies who are carriers of this or other red blood cell diseases.

Carriers are healthy, although they can experience problems in situations where their bodies aren’t getting much oxygen – for example, if they’re having an anaesthetic.

Parents of babies who are found to be carriers should be told by the time they’re 6 to 8 weeks old.

Read more about what being a carrier means.

What do the results mean?

Most babies will have a normal result, which means it’s unlikely that they have any of the conditions.

A small number of babies will screen positive for one of the conditions. This doesn’t mean they have the condition, but they’re more likely to have it. They’ll be referred to a specialist for more tests.

It’s important to know that screening isn’t 100% certain. A baby with a negative screening result may later turn out to have the disease screened for. This is known as a false negative.

Babies with a positive result sometimes turn out not to have the disease – what’s known as a false positive.

Occasionally, other medical conditions are picked up by blood spot test screening. For example, babies with beta thalassaemia major, a serious blood disease, will usually be detected. These babies also need to be referred for early treatment.

More information

• Frequently asked questions about blood spot screening
• Find out what happens to your baby’s blood spot card
• Download a leaflet about the newborn blood spot test (PDF, 4.35Mb) – also available in other languages
• Listen to an audio guide on the blood spot test

Editor’s Notes:

*Clarification provided for our US readers

** Resources outside the U.K.

• For the individual state test conditions and screening programs in the US visit here.
• For more information on newborn blood screening visit the CDC bulletin here.

 

Child Health and Safety News: 3/26 Teen Suicide Levels Soar

In this week’s Child Health News: Childhood Obesity Rates Are At Their Highest Since 1999 http://n.pr/2pmK5OW

Welcome to Pediatric Safety’s weekly “Child Health & Safety News Roundup”- a recap of the past week’s child health and safety news headlines from around the world. Each day we use social media to communicate relevant and timely health and safety information to the parents, medical professionals and caregivers who follow us. Occasionally we overlook something, but overall we think we’re doing a pretty good job of keeping you informed. Still, quite a bit happens every day – so to make sure you don’t miss anything, we offer you a recap of this week’s top 20 events & stories

• How to Help Your Child Stop Sucking Her Thumb http://bit.ly/2INUfB4 2018-3-25
• Parents Need to Take Extra Precaution When Dropping Their Kids Off at School http://bit.ly/2HTvbHF 2018-3-24
• In wake of Ariel’s disappearance, Quebec network shares tips to keep kids safe http://bit.ly/2ILUaOg 2018-3-24
• University Health Pediatric Patients and LSU Doctors switch roles for National Child Life Month http://bit.ly/2pCOg9H 2018-3-24
• My Child’s Behavior Is Out of Control. Now What? http://u.org/2HYj386 2018-3-23

PedSafe Child Health & Safety News Headline of the Week:
Teen suicide is soaring. Do spotty mental health and addiction treatment share blame?
https://usat.ly/2HNXNC8

• Seventeen children injured when 8-year-old student uses pepper spray at school assembly http://bit.ly/2pvUyYA 2018-3-23
• What I Learned Arguing With an 8-Year-Old http://bit.ly/2GIBOgG 2018-3-23
• Hospitalization, PICU admissions increasing for pediatric opioid ingestions http://bit.ly/2pxvTCN 2018-3-23
• A Wrinkle in Time is Tomorrow morning at AMC: http://bit.ly/2Ijj8Ve 2018-3-23
• Can FLOTUS Address Online Hate Without Using the C-Word? http://bit.ly/2u5vD3r 2018-3-22
• Here Is Why Toddlers Hit Themselves (And When You Should Be Concerned) http://bit.ly/2DHpZEt 2018-3-22
• When your child’s first food allergy reaction takes place in the air…mid-flight?? http://bit.ly/2FZL12L 2018-3-22
• Code Adam…Because You Don’t Have Eyes in the Back of Your Head – Thurs Time Capsule 02/11 http://bit.ly/2u3hyn3 2018-3-22
• Why Staying Together for the Kids Could Hurt Your Child’s Mental Health http://bit.ly/2u4ESky 2018-3-21
• What is Strep and How Can it Affect Your Family? http://bit.ly/2tYbNY7 2018-3-21
• Electronic device screen time may affect mental health of school-aged youths including social phobia and depressive symptoms http://bit.ly/2u39pPv 2018-3-21
• New York’s only freestanding pediatric health facility completed on the Buffalo Niagara Medical Campus http://bit.ly/2GKrmoG 2018-3-20
• 7 Ways to Deal With Moms That Bully Other Moms http://bit.ly/2pohppL 2018-3-20
• Soaring child suicide rates sparks launch of app that controls harmful content on mobiles http://bit.ly/2Iy74zz 2018-3-20
• “Reach Every Mother and Child Act (S.1730) proposes the USAID target existing funding towards maternal and child health” http://bit.ly/2FNdddd 2018-3-19
• New online resource helps military families deal with child mental health issues http://bit.ly/2FK6ZLe 2018-3-19

Nicotine Poisoning: How to Keep Your Child Safe

Congratulations, you have quit smoking. It is a huge step that can add years to your life and give you more time to spend with the ones you love. While quitting smoking is not an easy task, there is a whole industry now providing the products used to replace cigarettes called NRT or Nicotine Replacement Therapy. The most common items used to replace smoking are nicotine gum, the nicotine patch, and now the world has been introduced to the e-cigarette or vape.

The most common way children are exposed to nicotine and experience a reaction is direct exposure to nicotine they find around the house.

It goes without saying that anything left out, the kids will find, and that holds true in this case too. Kids will find a pack of gum and chew it or they will find a patch and use their bare hands to remove it from its applicator absorbing the nicotine through their skin. In a growing number of cases now, children are finding the liquid that is put into the vaporizers or e-cigarettes and drinking it because it looks like juice. In all of these examples the child gets exposed to nicotine and can have a reaction.

Nicotine poisoning tends to produce symptoms that follow a pattern. Nicotine poisoning symptoms are caused by extreme stimulation of nicotine in the central and autonomous system and the neuromuscular junction. At lower doses, nicotine causes stimulating effects on the receptors present there but at higher doses or more sustained exposure, the effects are inhibitory and can lead to neuromuscular problems.

The first symptoms are usually the result of the stimulating nature of nicotine. These include:

• vomiting
• hypertension
• headaches
• excessive salivation
• seizures

After the first phase of symptoms, other symptoms caused by the depressor effects of nicotine follows. These include:

• muscular weakness
• central nervous system depression
• paralysis
• coma
• labored breathing
• respiratory failure

Exposure to electronic cigarettes and liquid nicotine is also quickly becoming a major issue. In 2014, more than 50 percent of nicotine poisoning cases occurred in children under the age of 6. Children and toddlers who come in contact with e-cigarettes and liquid nicotine become very ill very quickly and they exhibit all the symptoms. It is harmful to them and adults should be extremely careful where they keep or place these products.

According to Medline, nicotine overdose may present many potential symptoms. These can include:

• Nausea and abdominal pain
• Cramping
• Restlessness or agitation
• Irregular breathing – either rapid breathing or difficulty breathing
• Convulsions
• Confusion
• Drooling
• Burning sensation in the mouth
• Weakness
• Vomiting
• Headache
• Fainting

In severe cases, the person may stop breathing. Seizures and coma have also been reported.

If you find your child with any of these symptoms and believe they have ingested nicotine please take them to the emergency room right away or call 911 and get professional help. In the case that your child presents with irregular breathing or any type of altered mental status, please call 911 first.

While we all congratulate you for taking the steps to quit smoking, please be cognizant of the new items that you are using, where you keep those items, and the risk they can pose to your family.

Thank you and please be safe.

Greg

Tomb Raider is Sensory Friendly Tuesday Night at AMC

AMC Entertainment (AMC) has expanded their Sensory Friendly Films program in partnership with the Autism Society. This Tuesday evening, families affected by autism or other special needs have the opportunity to view a sensory friendly screening of Tomb Raider, a film that may appeal to older audiences on the autism spectrum.

As always, the movie auditoriums will have their lights turned up and the sound turned down. Families will be able to bring in snacks to match their child’s dietary needs (i.e. gluten-free, casein-free, etc.), there are no advertisements or previews before the movie and it’s totally acceptable to get up and dance, walk, shout, talk to each other…and even sing – in other words, AMC’s “Silence is Golden®” policy will not be enforced during movie screenings unless the safety of the audience is questioned.

Does it make a difference? Absolutely! Imagine …no need to shhhhh your child. No angry stares from other movie goers. Many parents think twice before bringing a child to a movie theater. Add to that your child’s special needs and it can easily become cause for parental panic. But on this one day a month, for this one screening, everyone is there to relax and have a good time, everyone expects to be surrounded by kids – with and without special needs – and the movie theater policy becomes “Tolerance is Golden“.

AMC and the Autism Society will be showing Tomb Raider sensory friendly tomorrow, Tuesday, March 27th at 7pm (local time). Tickets can be as low as $4 to $6 depending on the location. To find a theatre near you, here is a list of AMC theatres nationwide participating in this fabulous program (note: to access full list, please scroll to the bottom of the page).

Coming in April: Ready Player One (Tues 4/10); Sherlock Gnomes (Sat. 4/13); Rampage (Tues 4/24)

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Editor’s note: Tomb Raider has been chosen by AMC and the Autism Society for a Tuesday Sensory Friendly “Mature Audience” screening. Parents should be advised that it is rated PG-13 by the Motion Picture Association of America for sequences of violence and action, and for some language. As always, please check the IMDB Parents Guide for a more detailed description of this film to determine if it is right for you and your family.

What I Learned Arguing With an 8-Year-Old

My step-son and I spent some time alone a couple of weeks ago. My grandmother-in-law passed away and my husband and I went to help his mother. When we got up there, my husband drove his mom on some errands and I was left to play with my newly 8 years-old step-son.

We had a wonderful time. He is currently obsessed with the lego show Ninjago and we played with legos, making up storylines and dancing to the pop punk theme songs of the show. This was my first time spending a significant amount of time alone with him and it was interesting. I learned some things about 8 year-olds, for instance, “poop” is the new word that he finds hilarious and children have their own logic.

We had transitioned from playing with legos to playing outside and were each playing with swords and some other toys. I was playing with a flower and he wanted it, so, he looked at me and said “Give me that.” Now, he and I do not have a particularly formal relationship. We play and talk about this and that and are generally very relaxed with each other. However, this demand had a very specific tone, parents, I’m sure you know the tone I’m talking about. It’s the one that says “I don’t know my boundaries with you and I’m gonna see if I can tell you what to do.”

This was new to me, I just recently reached a point in my life where I handle conflict well with adults, now I was being tested by an 8 year-old. Since we were still playing, I kept the mood light. I have no interest in being an authoritarian with him and I prefer to talk to him like he’s just a smaller human instead of a less intelligent one, so my response was quite simply to pause and say “no.” The result of this wasn’t a temper tantrum (though he did sulk briefly) but a back and forth conversation lasting about half an hour. We argued for a bit, him trying to grab it from me, me holding it over my head, neither of us actually angry, more just testing the relationship we have.

I told him early on that all he had to do to get the toy from me was say please. This caused a burst of annoyance and the logic eventually came out that “big boys don’t have to say please.” This was an interesting turn to me, so we talked about it. “Your dad says please,” I responded. He nodded and said “daddy’s an adult.” Okay, I thought, so “big boys” and “adults” are not the same. He elaborated further, “only little kids say please.”

This is where I learned that children will make up their own rationalizations for how the world works in order to get what they want. There is something very important about this. Adults do this too. In relationships, in parenting, in politics, in religion, we all choose a worldview that pleases us and takes us in what we consider to be the “right” direction.

Our conversation continued where I explained that people didn’t respond very well when they had things demanded of them. That it made them feel like they don’t have a choice, that they have to do what you want. He thought about this and looked at me a little shyly and asked if he could have the toy “please.” I grinned at him and tossed him the toy. We kept playing until my husband got home at which point my step-son immediately ran up to him and said “daddy, Clara and I got into a fight.” My husband smiled and his mother asked “who won?” And winked knowingly at me.

And that was that. There were no tears, no yelling, I didn’t focus on the “right” or “wrong” of the situation. I focused on the expression itself. I choose to be a guide and a sounding board, I choose to be less concerned with exerting my will over him and more concerned with how his world view is developing.

Many children are highly intelligent and are more than capable of having well thought out conversations about their thoughts, emotions, and choices.

By being curious and taking the time to listen to his explanation and talk things through I was able to create an understanding between our perspectives.

Shouldn’t that be the point of all communication?

I’d love to hear stories from you guys. What’s the strangest thing you’ve ever “argued” with your little one about? What conclusions did you reach?

What is Strep and How Can it Affect Your Family?